Integrating mHealth into the cancer care continuum may be an effective strategy to improve cancer survivorship care by supporting self-management. We aim to assess the effectiveness of mHealth applications (apps) for self-management in improving pain, psychological distress, fatigue, or sleep outcomes in adult cancer survivors. Experimental quantitative studies evaluating apps aiming to support self-management for adult cancer survivors and reporting pain, psychological distress, fatigue, or sleep outcomes were included. PubMed, Web of Science, Embase, CINAHL, PsycINFO, Scopus, and CENTRAL databases were searched from inception through December 2017. Risk of bias was assessed using the Cochrane risk of bias tool (PROSPERO registration number CRD42017081182). Seven studies of six mHealth interventions (n = 949 participants) were included. Two randomized controlled trials (RCTs), one quasi-RCT, one non-RCT, and three single-arm studies involved survivors with a mix of cancer types. The most common app features were symptom questionnaires (n = 5) and progress tracking (n = 5). Four studies reported outcomes for pain, with three showing improvements. Two studies reported psychological distress outcomes, showing mixed results. Four studies reported improvements in fatigue post-intervention or in the intervention compared with control group, but the changes were not all statistically significant. Two studies reported improvements in sleep outcomes. There is emerging evidence that mHealth interventions that support self-management can improve pain and fatigue outcomes in cancer survivors, and some promise for psychological distress and sleep outcomes. Further development and investigation of mHealth is needed, incorporating targeted, evidence-based models of care into app design. mHealth interventions can improve outcomes for cancer survivors and have significant potential to benefit this growing population due to their reach.

https://link.springer.com/content/pdf/10.1007/s11764-018-0730-8.pdf

The effectiveness of mHealth for self-management in improving pain, psychological distress, fatigue, and sleep in cancer survivors: a systematic review

Importance Although cognitive behavioral therapy (CBT) represents the criterion standard for treatment of binge eating disorder (BED), most individuals do not have access to this specialized treatment. Objective To evaluate the efficacy of internet-based guided self-help (GSH-I) compared with traditional, individual face-to-face CBT. Design, Setting, and Participants The Internet and Binge Eating Disorder (INTERBED) study is a prospective, multicenter, randomized, noninferiority clinical trial (treatment duration, 4 months; follow-ups, 6 months and 1.5 years). A volunteer sample of 178 adult outpatients with full or subsyndromal BED were recruited from 7 university-based outpatient clinics from August 1, 2010, through December 31, 2011; final follow-up assessment was in April 2014. Data analysis was performed from November 30, 2014, to May 27, 2015. Interventions Participants received 20 individual face-to-face CBT sessions of 50 minutes each or sequentially completed 11 internet modules and had weekly email contacts. Main Outcomes and Measures The primary outcome was the difference in the number of days with objective binge eating episodes (OBEs) during the previous 28 days between baseline and end of treatment. Secondary outcomes included OBEs at follow-ups, eating disorder and general psychopathologic findings, body mass index, and quality of life. Results A total of 586 patients were screened, 178 were randomized, and 169 had at least one postbaseline assessment and constituted the modified intention-to-treat analysis group (mean [SD] age, 43.2 [12.3] years; 148 [87.6%] female); the 1.5-year follow-up was available in 116 patients. The confirmatory analysis using the per-protocol sample (n = 153) failed to show noninferiority of GSH-I (adjusted effect, 1.47; 95% CI, −0.01 to 2.91; P  = .05). Using the modified intention-to-treat sample, GSH-I was inferior to CBT in reducing OBE days at the end of treatment (adjusted effect, 1.63; 95% CI, 0.17-3.05; P  = .03). Exploratory longitudinal analyses also showed the superiority of CBT over GSH-I by the 6-month (adjusted effect, 0.36; 95% CI, 0.23-0.55; P P  = .70). Reductions in eating disorder psychopathologic findings were significantly higher in the CBT group than in the GSH-I group at 6-month follow-up (adjusted effect, −0.4; 95% CI, −0.68 to −0.13; P  = .005). No group differences were found for body mass index, general psychopathologic findings, and quality of life. Conclusions and Relevance Face-to-face CBT leads to quicker and greater reductions in the number of OBE days, abstinence rates, and eating disorder psychopathologic findings and may be a better initial treatment option than GSH-I. Internet-based guided self-help remains a viable, slower-acting, low-threshold treatment alternative compared with CBT for adults with BED. Trial Registration isrctn.org Identifier:ISRCTN40484777and germanctr.de Identifier:DRKS00000409

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Effect of Internet-Based Guided Self-help vs Individual Face-to-Face Treatment on Full or Subsyndromal Binge Eating Disorder in Overweight or Obese Patients: The INTERBED Randomized Clinical Trial

As social media are evolving rapidly online support groups (OSG) are becoming increasingly important for patients. Therefore, the aim of our study was to compare the users of traditional face-to-face support groups and OSG. We performed a cross-sectional comparison study of all regional face-to-face support groups and the largest OSG in Germany. By applying validated instruments, the survey covered sociodemographic and disease-related information, decision-making habits, psychological aspects, and quality of life. We analyzed the complete data of 955 patients visiting face-to-face support groups and 686 patients using OSG. Patients using OSG were 6 years younger (65.3 vs. 71.5 years; p < 0.001), had higher education levels (47 vs. 21%; p < 0.001), and had higher income. Patients using OSG reported a higher share of metastatic disease (17 vs. 12%; p < 0.001). Patients using OSG reported greater distress. There were no significant differences in anxiety, depression, and global quality of life. In the face-to-face support groups, patient ratings were better for exchanging information, gaining recognition, and caring for others. Patients using OSG demanded a more active role in the treatment decision-making process (58 vs. 33%; p < 0.001) and changed their initial treatment decision more frequently (29 vs. 25%; p < 0.001). Both modalities of peer support received very positive ratings by their users and have significant impact on treatment decision-making. Older patients might benefit more from the continuous social support in face-to-face support groups. OSG offer low-threshold advice for acute problems to younger and better educated patients with high distress. www.germanctr.de
 , number DRKS00005086

Face-to-face vs. online peer support groups for prostate cancer: A cross-sectional comparison study

BACKGROUND: A primary variant of social media, online support groups (OSG) extend beyond the standard definition to incorporate a dimension of advice, support and guidance for patients. OSG are complementary, yet significant adjunct to patient journeys. Machine learning and natural language processing techniques can be applied to these large volumes of unstructured text discussions accumulated in OSG for intelligent extraction of patient-reported demographics, behaviours, decisions, treatment, side effects and expressions of emotions. New insights from the fusion and synthesis of such diverse patient-reported information, as expressed throughout the patient journey from diagnosis to treatment and recovery, can contribute towards informed decision-making on personalized healthcare delivery and the development of healthcare policy guidelines. METHODS AND FINDINGS: We have designed and developed an artificial intelligence based analytics framework using machine learning and natural language processing techniques for intelligent analysis and automated aggregation of patient information and interaction trajectories in online support groups. Alongside the social interactions aspect, patient behaviours, decisions, demographics, clinical factors, emotions, as subsequently expressed over time, are extracted and analysed. More specifically, we utilised this platform to investigate the impact of online social influences on the intimate decision scenario of selecting a treatment type, recovery after treatment, side effects and emotions expressed over time, using prostate cancer as a model. Results manifest the three major decision-making behaviours among patients, Paternalistic group, Autonomous group and Shared group. Furthermore, each group demonstrated diverse behaviours in post-decision discussions on clinical outcomes, advice and expressions of emotion during the twelve months following treatment. Over time, the transition of patients from information and emotional support seeking behaviours to providers of information and emotional support to other patients was also observed. CONCLUSIONS: Findings from this study are a rigorous indication of the expectations of social media empowered patients, their potential for individualised decision-making, clinical and emotional needs. The increasing popularity of OSG further confirms that it is timely for clinicians to consider patient voices as expressed in OSG. We have successfully demonstrated that the proposed platform can be utilised to investigate, analyse and derive actionable insights from patient-reported information on prostate cancer, in support of patient focused healthcare delivery. The platform can be extended and applied just as effectively to any other medical condition.

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Machine learning to support social media empowered patients in cancer care and cancer treatment decisions

Purpose of review Psychological distress and mental health comorbidity are common in cancer. Various therapeutic frameworks have been used for interventions to improve psychological wellbeing and quality of life in cancer patients with mixed results. This article reviews contributions to that literature published since January 2017. Recent findings The majority of new psychological intervention research in cancer has used cognitive behavioural therapy (CBT) or mindfulness-based interventions. CBT has been considered a gold-standard intervention and recent evidence justifies continuation of this. Recent reviews call into question the validity of evidence for mindfulness-based interventions. A smaller number of trials using acceptance and commitment therapy, meta-cognitive therapy, dignity therapy and coaching have emerged, and whereas findings are promising, additional fully powered trials are required. Weaker evidence exists for counselling, support-based and narrative therapy interventions. Summary Efficacious, timely and acceptable psychological interventions are a necessary component of comprehensive cancer care. There is some way to go before the evidence conclusively points towards which interventions work for which cancer groups and for which specific outcomes. Methodological limitations must be addressed in future trials; at the forefront remains the need for fully powered, head-to-head comparison trials.

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Psychological support for patients with cancer: evidence review and suggestions for future directions.

Objective To analyze the effect of an online support group (OSG) on the final treatment decision for localized prostate cancer. Methods We performed a cross-sectional descriptive study of the largest German prostate cancer OSG between July and October 2013. The online survey comprised 127 questions covering sociodemographic and disease-related information, decision-making habits, health-related quality of life, distress, depression, and anxiety. The primary outcome was to measure the effect of an OSG on the final treatment decision. Results We analyzed the completed questionnaires from 686 patients with prostate cancer, 200 (29.2%) of whom revised their initial treatment decision. After revising their decisions, these patients more frequently underwent external beam radiation therapy (44.5% vs. 36.4%, P = 0.048) and active surveillance (10.5% vs. 3.7%, P Conclusions Of all patients participating in the OSG, 29.2% revised their initial treatment decision. We estimate that this phenomenon may affect 17,000 patients with prostate cancer in the United States of America every year. This finding highlights the importance of OSGs for the health care system. The patient׳s desired degree of involvement in decision-making should be routinely clarified to adjust counseling accordingly. Trial registration www.germanctr.de , number DRKS00005086

The effect of an online support group on patients׳ treatment decisions for localized prostate cancer: An online survey.

A prostate cancer diagnosis affects not only the patients but also their family and friends. We performed a secondary analysis of a survey of users of the largest German online support group (OSG) for prostate cancer. We collected socio-demographic, psychological and disease-related data over a three-month period in 2013. Among 769 participants with a complete questionnaire, 686 were patients, and 83 were family members and friends of other patients. The family and friends group comprised 33% spouses, 31% children and 36% people with other relationships to the patient ("others"). Compared to the patient group, the family and friends group showed higher scores for anxiety and depression and described a higher rate of metastatic disease in the patients with whom they had a relationship. The children of patients showed the highest psychological burden based on their scores for anxiety and depression. Only 7% of spouses and none of the children attended face-to-face support groups, compared to 70% of people in the "others" group. OSGs offer low-threshold support for family members and friends; specifically, they meet the needs of spouses and children who do not attend face-to-face support groups. To improve counselling efforts, physicians should be aware of this online resource.

Online support groups offer low-threshold backing for family and friends of patients with prostate cancer.

Hintergrund Internetforen sind onlinegestutzte Diskussionsrunden, in denen Nutzer untereinander Erfahrungen, Ratschlage und Informationen austauschen. Der Bundesverband Prostatakrebs Selbsthilfe e. V. (BPS) betreibt das groste deutschsprachige Internetforum fur Prostatakrebs-Betroffene. Material und Methoden Mehrere Aspekte des BPS-Forums wurden untersucht: Inhaltsanalyse, Sprachgebrauch und Umgang miteinander, Einfluss auf die Therapieentscheidung, Vergleich mit klassischen Selbsthilfegruppen und die Nutzung durch Angehorige und Freunde. Ergebnisse Im Internetforum herrscht ein tentativer Kommunikationsstil mit reservierten Sprachmerkmalen vor. Neben dem Informationsaustausch scheint eine emotionale Unterstutzung vielen Nutzern sehr willkommen zu sein und stellt einen wesentlichen Teil des Austausches dar. Die Nutzung des Internetforums fuhrt bei 29 % der Patienten zu einer Veranderung der initialen Therapieentscheidung. Im Vergleich mit der Allgemeinbevolkerung fanden wir unter den Nutzern 2- bis 3-mal so hohe Raten an mit Angst und Depression belasteten Patienten. Im Vergleich zu den Patienten selbst zeigen insbesondere Familienmitglieder hohere Werte fur Angst und Depression und beschrieben eine hohere Rate an metastasierenden Erkrankungen bei den ihnen bekannten Patienten. Nutzer des Internetforums waren junger, hatten ein hoheres Bildungsniveau und ein hoheres Einkommen als Teilnehmer an klassischen Selbsthilfegruppen. Schlussfolgerung Internetforen werden von ihren Nutzern positiv bewertet und tragen zur Informationssammlung und zur emotionalen Unterstutzung bei. Sie haben wahrscheinlich einen signifikanten Einfluss auf die primare Behandlungsentscheidung und gestalten so die Versorgungswirklichkeit bei Prostatakarzinompatienten aktiv mit.

Philipp Maatz

Papers

Face-to-face vs. online peer support groups for prostate cancer: A cross-sectional comparison study

The effect of an online support group on patients׳ treatment decisions for localized prostate cancer: An online survey.

Online support groups offer low-threshold backing for family and friends of patients with prostate cancer.

Online support groups for patients with prostate cancer