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	<title>PRO-CTCAE &#8211; Science</title>
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	<title>PRO-CTCAE &#8211; Science</title>
	<link>https://scienmag.com</link>
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		<title>Text Message Screening Catches Nerve Damage in Chemotherapy Patients</title>
		<link>https://scienmag.com/text-message-screening-catches-nerve-damage-in-chemotherapy-patients/</link>
		
		<dc:creator><![CDATA[Nathaniel Bowman]]></dc:creator>
		<pubDate>Thu, 08 Oct 2026 11:44:19 +0000</pubDate>
				<category><![CDATA[Cancer]]></category>
		<category><![CDATA[cancer screening]]></category>
		<category><![CDATA[cancer survivors]]></category>
		<category><![CDATA[chemotherapy-induced peripheral neuropathy]]></category>
		<category><![CDATA[CIPN]]></category>
		<category><![CDATA[clinical implementation]]></category>
		<category><![CDATA[clinical study on CIPN detection]]></category>
		<category><![CDATA[early detection of nerve damage in chemotherapy patients]]></category>
		<category><![CDATA[impact of nerve damage on quality of life]]></category>
		<category><![CDATA[innovative approaches to neuropathy assessment]]></category>
		<category><![CDATA[integration of digital tools in cancer treatment]]></category>
		<category><![CDATA[low-burden screening tools for cancer care]]></category>
		<category><![CDATA[nerve damage in cancer patients]]></category>
		<category><![CDATA[neurotoxic chemotherapy side effects]]></category>
		<category><![CDATA[neurotoxicity]]></category>
		<category><![CDATA[oncology]]></category>
		<category><![CDATA[patient-reported outcome measures]]></category>
		<category><![CDATA[PRO-CTCAE]]></category>
		<category><![CDATA[routine CIPN screening methods]]></category>
		<category><![CDATA[supportive care]]></category>
		<category><![CDATA[symptom monitoring]]></category>
		<category><![CDATA[text message reminders]]></category>
		<category><![CDATA[use of text message screening in oncology]]></category>
		<guid isPermaLink="false">https://scienmag.com/?p=247442</guid>

					<description><![CDATA[A Sydney study shows that brief patient-reported questionnaires delivered by automated text messages can feasibly screen chemotherapy patients for peripheral neuropathy, detecting symptom worsening over a treatment course with high acceptability.]]></description>
										<content:encoded><![CDATA[<p>Chemotherapy saves lives, but for many patients it leaves behind an unwelcome souvenir: nerve damage that can turn hands and feet into zones of numbness, tingling, burning pain, and lost dexterity. Chemotherapy-induced peripheral neuropathy, or CIPN, affects more than 70 percent of cancer survivors treated with neurotoxic drugs such as taxanes, platinum compounds, vinca alkaloids, proteasome inhibitors, and antibody-drug conjugates. In severe cases it forces oncologists to cut doses or abandon treatment altogether, and in the long term it can erode balance, fine motor control, and quality of life. Yet despite consensus guidelines recommending screening before every chemotherapy cycle, routine CIPN assessment remains patchy, largely because clinics lack a practical, low-burden way to do it. A new study published in Supportive Care in Cancer suggests the solution may be as simple as a text message.</p>
<p>Researchers led by Alice Treloar and Susanna B. Park of the University of Sydney set out to test whether brief patient-reported questionnaires could be woven into everyday cancer care at two oncology centres in Sydney, Australia. Between March 2022 and November 2023, they recruited 159 adults who were receiving or about to receive neurotoxic chemotherapy, including platinum, taxane, anti-microtubule, vinca alkaloid, and bortezomib-based regimens. The screening package, dubbed CIPN-Screen, combined three short patient-reported outcome measures: the two-item sensory neuropathy subscale of the National Cancer Institute&#8217;s PRO-CTCAE, the two-item Patient Neurotoxicity Questionnaire, and the 11-item EviQ online neurotoxicity instrument. Anyone reporting symptoms was invited to complete the longer 20-item EORTC QLQ-CIPN-20 questionnaire to characterise the impact of their symptoms in more detail.</p>
<p>The crucial difference between the two sites was how patients were asked to participate. At the first centre, clinical staff approached patients during chemotherapy visits and offered a QR code or paper copy, a model that depended entirely on busy nurses and doctors remembering to hand out surveys. At the second centre, patients were enrolled once and then received an automated text message reminder before every chemotherapy appointment, requiring no ongoing input from clinical staff whatsoever. The contrast in results was striking. The staff-driven site produced just 109 completed screens across 75 participants, with a median of a single screen per person. The text-message site generated 646 screens among 84 participants, with a median of eight screens per patient, all completed online.</p>
<p>In total, 755 screening episodes were collected, and the data they yielded paint a sobering picture of neuropathy in the chemotherapy population. Just over 56 percent of screens identified CIPN symptoms, and 18.3 percent detected moderate to severe symptoms on the PRO-CTCAE scale. Roughly a third of screens at both centres indicated that the neuropathy was having a functional impact. Patients reported that nerve symptoms interfered with sleep, breathing, buttoning clothes, working, and walking. Notably, the proportion of symptomatic patients and the severity distribution were almost identical between the two centres, despite their very different demographics and delivery methods, suggesting the screening tools themselves were capturing something real and consistent.</p>
<p>Acceptability, the make-or-break factor for any screening programme, was overwhelmingly positive. Across all screens, 92 percent of respondents agreed or strongly agreed that CIPN-Screen was easy to complete, 91.6 percent found it easy to understand, and 85.6 percent said it helped them describe their symptoms. Acceptability held steady regardless of age, sex, or chemotherapy type, and it did not fade with repeated use: responses to the acceptability questions did not change significantly between the first and sixth screens. Interestingly, however, patients with moderate to severe symptoms rated the tool slightly less favourably than those with mild or no symptoms, particularly on the question of whether it helped them describe what they were feeling. The authors speculate that very brief questionnaires may not capture the full range of symptoms experienced by the worst-affected patients, who may also need more clinical input than a short survey can trigger.</p>
<p>The study also demonstrated something scientifically important: the screening tool was responsive to change. Among 52 participants at the text-message centre who completed seven consecutive screens over a median of 49 days, the proportion reporting CIPN symptoms rose from 27 percent at the first screen to 63 percent by the seventh, a statistically significant trajectory that tracked the cumulative neurotoxicity of ongoing treatment. In other words, the brief questionnaires did not merely snapshot a moment; they charted the emergence and worsening of nerve damage across a chemotherapy course. This longitudinal sensitivity is exactly what clinicians would need to make informed decisions about dose modification before irreversible damage sets in.</p>
<p>The three short instruments also agreed strongly with one another, with correlation coefficients of 0.84 or higher for most pairwise comparisons, and the PRO-CTCAE severity grades differentiated scores on the longer CIPN-20 questionnaire with high statistical significance. This internal consistency matters because it suggests clinics could reasonably pick a single brief instrument rather than deploying a battery of surveys. Prior Delphi consensus work has indicated that questionnaires longer than three items rate poorly for feasibility in busy infusion units, so a validated two-item screener that correlates well with comprehensive instruments is an attractive proposition for real-world oncology.</p>
<p>Patients, however, are only half of the implementation equation. The researchers also surveyed 31 clinicians, including medical and nursing staff and allied health personnel, using the adapted Organisational Readiness for Implementing Change questionnaire. Both centres scored in the mid-range for readiness for change, with mean scores of 43.5 and 46.4. Encouragingly, the highest-rated items concerned motivation: around 85 to 89 percent of clinicians at each site agreed that their colleagues wanted to implement CIPN screening. The weakest link was confidence in navigating the organisational politics of implementation, where agreement fell to between 39 and 46 percent. The authors argue that this gap between willingness and organisational confidence is precisely where tailored implementation strategies, staff training, and integration with electronic medical records must focus.</p>
<p>The study has honest limitations. It was a clinical implementation study rather than a randomised trial, so delivery methods differed by site and the cohorts skewed young and female, dominated by breast cancer patients at the text-message centre. Screening information was not fed back into clinical decisions, so the researchers could not measure whether enhanced screening actually reduced dose interruptions or chronic neuropathy, and no neurological examination was performed to confirm diagnoses. The authors also note that automated electronic collection could disadvantage patients less comfortable with digital tools, and that CIPN itself can impair the hand function needed to complete electronic surveys.</p>
<p>Even so, the central message is hard to ignore. A two-item questionnaire, delivered by an automated text message tied to a chemotherapy appointment, achieved near-perfect completion rates, detected symptom evolution over time, and required almost no clinician labour. International guidelines already endorse electronic symptom monitoring in cancer care, and large real-world programmes in Europe have shown high patient compliance and meaningful reductions in symptom burden. What this study adds is a concrete demonstration that CIPN screening specifically can be automated, scaled, and tolerated by patients across age groups and treatment types. The next step, the researchers say, is embedding such tools into electronic medical records with real-time delivery of results to treating clinicians, and pairing screening with guided clinical pathways so that a flagged symptom actually changes management. For the millions of cancer survivors living with numb hands and unsteady feet, a routine text message that catches nerve damage early could make the difference between a temporary side effect and a lifelong disability.</p>
<p><strong>Subject of Research:</strong> Feasibility and acceptability of patient-reported screening for chemotherapy-induced peripheral neuropathy in routine cancer care</p>
<p><strong>Article Title:</strong> Feasibility of clinical implementation and acceptability of patient-reported screening for chemotherapy-induced peripheral neuropathy (CIPN)</p>
<p><strong>Article References:</strong> Treloar, A., Grimison, P., Choi, V., Young, J., Mayer, K., Li, T., Boyle, F., King, T., Mizrahi, D., Horvath, L. G., Goldstein, D., &amp; Park, S. B. (2026). Feasibility of clinical implementation and acceptability of patient-reported screening for chemotherapy-induced peripheral neuropathy (CIPN). <em>Supportive Care in Cancer, 34</em>(11), Article 1073. <a href="https://doi.org/10.1007/s00520-026-11296-4" rel="noopener noreferrer">https://doi.org/10.1007/s00520-026-11296-4</a></p>
<p><strong>Image Credits:</strong> AI Generated</p>
<p><strong>DOI:</strong> <a href="https://doi.org/10.1007/s00520-026-11296-4" rel="noopener noreferrer">10.1007/s00520-026-11296-4</a></p>
<p><strong>Keywords:</strong> chemotherapy-induced peripheral neuropathy, CIPN, patient-reported outcome measures, cancer screening, supportive care, text message reminders, PRO-CTCAE, oncology, neurotoxicity, cancer survivors, clinical implementation, symptom monitoring</p>
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		<post-id xmlns="com-wordpress:feed-additions:1">247442</post-id>	</item>
		<item>
		<title>Appetite Loss During Chemotherapy Drains Diet and Quality of Life in Gynecologic Cancer Patients</title>
		<link>https://scienmag.com/appetite-loss-during-chemotherapy-drains-diet-and-quality-of-life-in-gynecologic-cancer-patients/</link>
		
		<dc:creator><![CDATA[Nathaniel Bowman]]></dc:creator>
		<pubDate>Fri, 02 Oct 2026 15:36:58 +0000</pubDate>
				<category><![CDATA[Cancer]]></category>
		<category><![CDATA[appetite loss]]></category>
		<category><![CDATA[calorie and nutrient intake reduction in chemotherapy]]></category>
		<category><![CDATA[chemotherapy]]></category>
		<category><![CDATA[chemotherapy-induced appetite loss]]></category>
		<category><![CDATA[clinical significance of appetite loss in cancer treatment]]></category>
		<category><![CDATA[dietary intake]]></category>
		<category><![CDATA[dietary intake decline in cancer patients]]></category>
		<category><![CDATA[EORTC QLQ-C30]]></category>
		<category><![CDATA[gynecologic cancer]]></category>
		<category><![CDATA[impact on nutrition during cancer treatment]]></category>
		<category><![CDATA[micronutrients]]></category>
		<category><![CDATA[nutrition]]></category>
		<category><![CDATA[nutrition management during chemotherapy]]></category>
		<category><![CDATA[patient-reported outcome measures in oncology]]></category>
		<category><![CDATA[patient-reported outcomes]]></category>
		<category><![CDATA[PRO-CTCAE]]></category>
		<category><![CDATA[prospective observational study on cancer patients]]></category>
		<category><![CDATA[Quality of Life]]></category>
		<category><![CDATA[quality of life in gynecologic oncology patients]]></category>
		<category><![CDATA[supportive care]]></category>
		<category><![CDATA[supportive care for cancer-related appetite loss]]></category>
		<category><![CDATA[supportive care strategies for gynecologic cancer]]></category>
		<category><![CDATA[taste changes]]></category>
		<guid isPermaLink="false">https://scienmag.com/?p=228411</guid>

					<description><![CDATA[A prospective Japanese study of 105 gynecologic cancer patients found that appetite loss during chemotherapy was linked to sharply reduced calorie and nutrient intake, taste alterations, and declining quality of life.]]></description>
										<content:encoded><![CDATA[<p>A quiet symptom that many oncologists treat as an afterthought may be doing far more damage than previously appreciated. A prospective observational study from Kyoto University Hospital, published in Supportive Care in Cancer, has found that nearly four in ten patients with gynecologic cancer lose their appetite during chemotherapy, and that this loss is tightly linked to steep drops in calorie and nutrient intake as well as a measurable decline in quality of life. The findings, drawn from detailed dietary questionnaires and validated patient-reported outcome measures, position appetite loss not as a minor nuisance but as a clinically meaningful target for supportive care in a population that has been largely overlooked in nutrition research.</p>
<p>The research team, led by Ayami Koike and colleagues in the Department of Gynecology and Obstetrics, enrolled 153 patients newly diagnosed with gynecologic malignancies between July 2022 and March 2026. After accounting for withdrawals and incomplete data, 105 patients formed the analytical cohort. Each participant completed a brief validated self-administered diet history questionnaire capturing dietary habits over the preceding month, once at baseline before treatment began and again one day before the third chemotherapy cycle. Appetite and quality of life were measured with the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30, known as the EORTC QLQ-C30, while treatment-related symptoms were tracked using the patient-reported version of the Common Terminology Criteria for Adverse Events, or PRO-CTCAE.</p>
<p>The headline result was stark. Forty-one of the 105 patients, or 39.0 percent, reported appetite loss before their third chemotherapy cycle. Compared with patients who maintained their appetite, this group experienced a median additional reduction in daily energy intake of 320.8 kilocalories, with a 95 percent confidence interval stretching from 454.5 down to 119.3 kilocalories per day. The decline was not confined to total calories. Protein intake fell by a median of 12.0 grams per day, fat by 8.3 grams, and carbohydrate by 25.6 grams more in the appetite loss group, each difference statistically significant. Crucially, the proportion of energy derived from protein, fat, and carbohydrate, the so-called PFC ratio, did not differ between the groups, indicating that appetite loss shrinks the entire diet roughly proportionally rather than skewing it toward any particular macronutrient.</p>
<p>The micronutrient analysis added a layer of nuance. Of the 16 clinically relevant micronutrients examined, 13 showed significantly larger decreases in the appetite loss group after correction for multiple comparisons using the Benjamini-Hochberg false discovery rate procedure. Iron, zinc, magnesium, and vitamin B2 displayed the largest effect sizes, with Hedges&#8217; g values ranging from minus 0.68 to minus 0.76, while the remaining nine nutrients showed small to moderate effects. Yet when the researchers adjusted for total energy intake by expressing micronutrient consumption as nutrient density per 1,000 kilocalories, none of the between-group differences remained significant. In other words, the diet of patients with appetite loss appears to shrink uniformly, preserving its nutritional composition in relative terms even as absolute intakes of vitamins and minerals fall in ways that could matter for patients facing prolonged energy restriction.</p>
<p>At the level of individual food groups, a telling pattern emerged. Patients with appetite loss showed a significantly greater decline in red and processed meat consumption, with a median difference of minus 6.1 grams per day, while dairy products and legumes also trended downward. Poultry, fish, vegetables, fruits, sweets, and staple carbohydrate sources such as rice and other grains showed no meaningful differences between groups. This selective retreat from meat is consistent with a growing body of literature identifying meat as the most commonly aversive food during anticancer treatment, and with studies linking impaired taste function to reduced preference for protein-rich foods. The researchers suggest that altered food preferences during chemotherapy, rather than a uniform distaste for all foods, may be shaping what patients can and cannot bring themselves to eat.</p>
<p>When the team probed which treatment side effects were most closely tied to appetite loss, one stood out above the rest. In multivariable linear regression models adjusted for age and body mass index, taste changes were significantly associated with appetite loss scores, carrying a beta coefficient of 8.7 with a 95 percent confidence interval of 1.3 to 16.1 and a p value of 0.02. Fatigue, constipation, nausea, mouth sores, diarrhea, and dry mouth all failed to reach significance. The finding carries a provocative implication: the distortion of taste that many patients describe during chemotherapy may be a principal driver of the anorexia that follows, rather than nausea or gastrointestinal distress as is often assumed.</p>
<p>The connection to quality of life was equally compelling. Changes in appetite loss scores were negatively correlated with changes in global health status and quality of life, with a Spearman correlation coefficient of minus 0.31 and a p value of 0.002. The associations were strongest for role functioning, cognitive functioning, social functioning, and emotional functioning, with correlation coefficients of minus 0.49, minus 0.42, minus 0.35, and minus 0.28 respectively, and weakest for physical functioning, which did not reach statistical significance. This gradient suggests that appetite loss may weigh more heavily on psychological and social well-being than on the body&#8217;s mechanical capacity, a pattern consistent with prior research linking poor food intake to depressive symptoms and diminished quality of life in cancer populations.</p>
<p>To test whether appetite loss tracks with quality of life fluctuations over time, the investigators turned to a separate multicenter cohort of 127 patients with gynecologic malignancies treated at five Japanese institutions between June 2020 and March 2024. Patient-reported outcomes were collected longitudinally over a 15-week observation period, revealing that global quality of life scores fluctuate within each chemotherapy cycle, dipping in the first week after treatment and recovering by the second. Machine learning models built to identify which symptom changes best predicted clinically meaningful quality of life shifts, defined as a change of at least 10 points on the EORTC QLQ-C30 global score, consistently ranked appetite loss among the most influential features, with model interpretation performed using Shapley additive explanations. The implication is sobering: some of the most clinically relevant swings in a patient&#8217;s well-being may occur between hospital visits, precisely when clinicians are least able to observe them.</p>
<p>Notably, appetite loss did not translate into the objective nutritional markers clinicians often rely upon. The proportion of patients losing more than 5 percent of body weight was similar between groups, at 26.8 percent versus 21.9 percent, and serum albumin levels and the Prognostic Nutritional Index, a composite of albumin and lymphocyte count, showed no significant differences. This dissociation between subjective dietary collapse and stable laboratory parameters suggests that conventional biochemical surveillance may miss the early, patient-centered harm caused by appetite loss, and that patient-reported measures deserve a more central role in monitoring. Nutritional counseling, it is worth noting, was provided to only 7.6 percent of patients, with no significant difference between groups.</p>
<p>The authors are careful about causality. Appetite was assessed over the preceding week while diet questionnaires covered the preceding month, so the temporal direction of the association cannot be established, and the definition of appetite loss included mild symptoms that may not generalize to severe anorexia. Selection bias cannot be excluded, serum zinc was not measured, and residual confounding by postoperative recovery remains possible, since most patients received adjuvant chemotherapy after surgery. Sensitivity analyses, however, strengthened the core findings: restricting the analysis to patients without baseline appetite loss, adjusting for surgical approach and the interval from surgery to chemotherapy, and grading appetite loss severity all produced directionally consistent results. The clinical message is clear. Because appetite loss and taste alterations are common, detectable, and plausibly treatable, whether through dietary counseling tailored to taste changes, oral nutritional supplements, or emerging pharmacological options such as olanzapine and mirtazapine that have improved both appetite and quality of life in cancer trials, systematic screening with electronic patient-reported outcome tools could catch the problem before it erodes a patient&#8217;s nutrition and spirit mid-treatment.</p>
<p><strong>Subject of Research:</strong> Appetite loss, dietary intake, and quality of life during chemotherapy for gynecologic cancer</p>
<p><strong>Article Title:</strong> Appetite loss during chemotherapy is associated with reduced dietary intake and quality of life in patients with gynecologic cancer: a prospective observational study</p>
<p><strong>Article References:</strong> Koike, A., Mizuno, R., Higashiyama, N., Inayama, Y., Umemiya, M., Ikeda, K., Kubo, N., Tokushige, Y., Nagasawa, T., Matsumura, N., Miyamoto, T., Taki, M., Yamanoi, K., Murakami, R., Yamaguchi, K., &amp; Mandai, M. (2026). Appetite loss during chemotherapy is associated with reduced dietary intake and quality of life in patients with gynecologic cancer: a prospective observational study. <em>Supportive Care in Cancer, 34</em>(10), Article 1046. <a href="https://doi.org/10.1007/s00520-026-11276-8" rel="noopener noreferrer">https://doi.org/10.1007/s00520-026-11276-8</a></p>
<p><strong>Image Credits:</strong> AI Generated</p>
<p><strong>DOI:</strong> <a href="https://doi.org/10.1007/s00520-026-11276-8" rel="noopener noreferrer">10.1007/s00520-026-11276-8</a></p>
<p><strong>Keywords:</strong> gynecologic cancer, chemotherapy, appetite loss, dietary intake, quality of life, taste changes, micronutrients, EORTC QLQ-C30, PRO-CTCAE, supportive care, nutrition, patient-reported outcomes</p>
]]></content:encoded>
					
		
		
		<post-id xmlns="com-wordpress:feed-additions:1">228411</post-id>	</item>
		<item>
		<title>Why Cancer Patients Aren&#8217;t Using Digital Symptom Tracking Apps</title>
		<link>https://scienmag.com/why-cancer-patients-arent-using-digital-symptom-tracking-apps/</link>
		
		<dc:creator><![CDATA[Nathaniel Bowman]]></dc:creator>
		<pubDate>Fri, 02 Oct 2026 13:12:39 +0000</pubDate>
				<category><![CDATA[Cancer]]></category>
		<category><![CDATA[adolescent and young adult cancer support tools]]></category>
		<category><![CDATA[adolescents and young adults]]></category>
		<category><![CDATA[barriers to digital health adoption in oncology]]></category>
		<category><![CDATA[cancer care]]></category>
		<category><![CDATA[cancer symptom tracking]]></category>
		<category><![CDATA[challenges of implementing digital health tools in real-world settings]]></category>
		<category><![CDATA[clinical trials vs. real-world use of symptom tracking apps]]></category>
		<category><![CDATA[digital health disparities in cancer support]]></category>
		<category><![CDATA[digital symptom monitoring]]></category>
		<category><![CDATA[digital symptom monitoring in cancer care]]></category>
		<category><![CDATA[effectiveness of electronic symptom reporting in cancer treatment]]></category>
		<category><![CDATA[eHealth]]></category>
		<category><![CDATA[health communication]]></category>
		<category><![CDATA[implementation science]]></category>
		<category><![CDATA[open-source symptom monitoring platforms for cancer patients]]></category>
		<category><![CDATA[OpenSYMPRO]]></category>
		<category><![CDATA[Patient Engagement]]></category>
		<category><![CDATA[patient engagement with symptom tracking apps]]></category>
		<category><![CDATA[patient-reported outcomes]]></category>
		<category><![CDATA[patient-reported outcomes in cancer care]]></category>
		<category><![CDATA[PRO-CTCAE]]></category>
		<category><![CDATA[supportive care]]></category>
		<category><![CDATA[systemic therapy]]></category>
		<category><![CDATA[web-based tools for chemotherapy symptom management]]></category>
		<guid isPermaLink="false">https://scienmag.com/?p=227871</guid>

					<description><![CDATA[A Dutch evaluation of the OpenSYMPRO platform found that only twenty patients enrolled over eighteen months, with barriers ranging from study overload and forgetting the app to limited perceived value during demanding cancer treatment.]]></description>
										<content:encoded><![CDATA[<p>Digital symptom monitoring has become one of the most promising advances in supportive cancer care. When patients regularly report their symptoms through electronic tools, clinicians can catch problems earlier, adjust medications sooner, and in some landmark trials, even extend survival. Yet a new study from the Netherlands reveals a sobering gap between what these tools can achieve in controlled trials and what actually happens when they are released into the messy reality of patients&#8217; lives. An open-access symptom tracking platform designed to reach adolescents and young adults with cancer attracted only twenty users in eighteen months, and most of them barely engaged with it at all.</p>
<p>The study, published in Supportive Care in Cancer, evaluated OpenSYMPRO, a web application built on an existing Dutch symptom monitoring tool called SYMPRO. The original SYMPRO app required enrollment by a healthcare professional, which meant patients could only use it if their hospital participated. OpenSYMPRO removed that gatekeeping entirely: anyone starting systemic therapy such as chemotherapy, immunotherapy, hormonal therapy, or targeted treatment could self-register, complete a short intake about their diagnosis, and begin receiving weekly questionnaires based on the validated Dutch version of the Patient-Reported Outcomes Common Terminology Criteria for Adverse Events, or PRO-CTCAE. Each questionnaire took roughly five minutes and asked about symptom severity, frequency, and interference with daily life over the past week.</p>
<p>The technical architecture was thoughtfully designed. Computerized adaptive testing skipped follow-up questions when patients reported no symptoms, minimizing burden. Predefined alerting algorithms, based on healthcare risk thresholds and specific symptom patterns, prompted users to contact their care team when responses suggested something concerning. Symptom reports were generated across three tabs showing alert-triggering symptoms, overall scores per symptom, and item-level details, which patients were encouraged to share during consultations. Because OpenSYMPRO was deliberately not linked to hospitals, alerts were not forwarded to clinicians directly; instead, the app followed a reactive model in which patients themselves were advised to seek care when alerts appeared. Data were stored securely within the PROFILES registry, and the platform was free, accessible on all mobile devices, and supported by tutorials developed with a patient organization and a dedicated helpdesk.</p>
<p>None of this was enough to generate meaningful uptake. After eighteen months of open availability and six months of hospital-based promotion of the regular SYMPRO tool, just twenty participants had enrolled by logging in at least once. Eighteen came through OpenSYMPRO and two through the hospital route, and neither of the hospital-enrolled patients completed a single questionnaire. Of the full sample, seven were frequent users who completed more than two symptom questionnaires, nine completed only one or two, and four never filled out any at all. The original research plan, which aimed to compare adolescents and young adults using the open platform with older patients using the hospital-based version, had to be abandoned entirely because recruitment fell so far short of expectations.</p>
<p>The research team pivoted to an exploratory question: why had engagement been so low? All twenty participants were invited to give feedback through interviews or questionnaires, and nine responded, including seven within the adolescent and young adult age range and two outside it. Thematic analysis of their accounts surfaced five recurring barriers, and notably, none of them were technical. Participants generally found the platform easy to operate, and no substantial technical problems were reported. One respondent even remarked that the tech part worked well enough. The obstacles were organizational, communicative, and deeply personal.</p>
<p>The first barrier was study overload. Several participants described feeling inundated by invitations to join multiple research projects and digital tools during their cancer trajectory, leaving them confused about each initiative&#8217;s purpose. One participant said she was called by so many different people that she honestly did not remember who was from which study anymore. Closely related was perceived overlap: some felt that OpenSYMPRO&#8217;s questions closely resembled those from other studies, creating a sense of answering the same things repeatedly. A third theme was simply forgetting. Several participants had completely lost track of the app or no longer remembered its purpose, suggesting that digital tools fade from attention quickly when they are not anchored to routine care. One respondent, contacted for an interview, admitted having no idea what the app was about or why the researchers were calling.</p>
<p>The remaining barriers cut to the heart of what cancer treatment actually feels like. Many participants described the treatment period as intense and emotionally overwhelming, leaving little time or cognitive capacity for even minor additional tasks such as a five-minute questionnaire. As one put it, a lot was happening at the time and she just could not deal with anything extra. Finally, some questioned the app&#8217;s added value altogether. One noted that chemotherapy-related symptoms were too severe to forget, making a tracking tool redundant. Another said that if she did not experience a particular side effect, she did not want to be made aware that it could occur, a striking reminder that symptom education can itself become a source of anxiety. Several believed they could communicate their symptoms effectively to clinicians without any app.</p>
<p>These findings matter because the evidence base for digital symptom monitoring is otherwise so strong. Large randomized trials have shown that routine electronic patient-reported outcome monitoring improves health-related quality of life, reduces emergency visits, and in some analyses improves overall survival, likely because alerting algorithms enable intervention before symptoms escalate. But those successes almost always occurred within tightly integrated clinical workflows, where clinicians actively reviewed patient reports and responded to alerts. OpenSYMPRO&#8217;s open, patient-initiated model deliberately severed that connection to maximize access, particularly for young adults whose care in the Netherlands is scattered across multiple hospitals and subspecialties. The results suggest that access alone, without visible ties to the care team and clear communication of personal benefit, may be insufficient to sustain engagement, although the authors caution that their exploratory data cannot establish this causally.</p>
<p>The study has important limitations that shape how its lessons should be applied. The sample was very small and clinically heterogeneous, qualitative feedback came from only nine respondents, and data saturation cannot be assumed. Crucially, the researchers could only gather feedback from people who had registered; patients who encountered the tool but chose not to sign up could not be approached, meaning the data illuminate discontinuation far better than initial non-uptake. Age at diagnosis was available for nineteen of twenty participants, but age at study participation was not, complicating interpretation of life-stage effects. The authors also acknowledge that design-related barriers, such as the choice of a web application rather than a downloadable app, visibility, navigation, and the number of steps required to engage, were not systematically evaluated and cannot be excluded, particularly among those who disengaged earliest.</p>
<p>Even so, the recommendations that emerge are concrete and likely to resonate with anyone implementing digital health tools. The authors argue that research teams and clinicians should coordinate introductions to avoid duplicating requests, ideally harmonizing data collection within a single integrated app. Digital symptom monitoring should be woven into routine care rather than offered as a standalone extra, with healthcare professionals actively involved, as demonstrated by successful European initiatives used by thousands of patients. Passive email reminders should be replaced or supplemented by personalized strategies tied to treatment milestones and concrete clinical decisions, ideally delivered through familiar hospital systems. Flexible participation models that allow patients to pause during intensive treatment phases could respect the realities of their capacity. Whether adolescents and young adults need additional design adaptations tailored to their developmental stage remains an open question that future co-design studies will need to answer. What this study makes clear is that the hardest problems in digital oncology are not computational but human: attention, trust, timing, and the simple question every patient implicitly asks of a new tool, which is what exactly is in it for me.</p>
<p><strong>Subject of Research:</strong> Real-world uptake and engagement with a digital symptom-monitoring tool among patients with cancer receiving systemic therapy</p>
<p><strong>Article Title:</strong> Digital symptom monitoring in cancer care: an exploratory evaluation of low uptake and engagement</p>
<p><strong>Article References:</strong> Mols, F., Hendriks, M., Bol, N., Sleeman, S., Husson, O., van Eenbergen, M., &amp; van den Hurk, C. (2026). Digital symptom monitoring in cancer care: an exploratory evaluation of low uptake and engagement. <em>Supportive Care in Cancer, 34</em>(10), Article 1045. <a href="https://doi.org/10.1007/s00520-026-11297-3" rel="noopener noreferrer">https://doi.org/10.1007/s00520-026-11297-3</a></p>
<p><strong>Image Credits:</strong> AI Generated</p>
<p><strong>DOI:</strong> <a href="https://doi.org/10.1007/s00520-026-11297-3" rel="noopener noreferrer">10.1007/s00520-026-11297-3</a></p>
<p><strong>Keywords:</strong> digital symptom monitoring, patient-reported outcomes, cancer care, adolescents and young adults, eHealth, PRO-CTCAE, systemic therapy, patient engagement, implementation science, supportive care, OpenSYMPRO, health communication</p>
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