‘Oncokompas’, a web-based self-management application to support patient activation and optimal supportive care: a feasibility study among breast cancer survivors

References

• Pauwels EE, Charlier C, De Bourdeaudhuij I, et al. Care needs after primary breast cancer treatment. Survivors' associated sociodemographic and medical characteristics. Psychooncology. 2013;22:125–132.
   PubMed Web of Science ®Google Scholar
• Abrahams HJG, Gielissen MFM, Schmits IC, et al. Risk factors, prevalence, and course of severe fatigue after breast cancer treatment: a meta-analysis involving 12 327 breast cancer survivors. Ann Oncol. 2016;27:965–974.
   PubMed Web of Science ®Google Scholar
• Fiszer C, Dolbeault S, Sultan S, et al. Prevalence, intensity, and predictors of the supportive care needs of women diagnosed with breast cancer: a systematic review. Psychooncology. 2014;23:361–374.
   PubMed Web of Science ®Google Scholar
• Mols F, Vingerhoets AJ, Coebergh JW, et al. Quality of life among long-term breast cancer survivors: a systematic review. Eur J Cancer. 2005;41:2613–2619.
   PubMed Web of Science ®Google Scholar
• Howard-Anderson J, Ganz PA, Bower JE, et al. Quality of life, fertility concerns, and behavioral health outcomes in younger breast cancer survivors: a systematic review. J Natl Cancer Inst. 2012;104:386–405.
   PubMed Web of Science ®Google Scholar
• Aaronson NK, Mattioli V, Minton O, et al. Beyond treatment: psychosocial and behavioural issues in cancer survivorship research and practice. EJC Suppl. 2014;12:54–64.
   PubMedGoogle Scholar
• Van Der Hout A, Van Uden-Kraan CF, Witte BI, et al. Efficacy, cost-utility and reach of an eHealth self-management application ‘Oncokompas’ that helps cancer survivors to obtain optimal supportive care: study protocol for a randomised controlled trial. Trials. 2017;18:228.
   PubMed Web of Science ®Google Scholar
• Meneses-Echávez JF, González-Jiménez E, Ramírez-Vélez R. Effects of supervised exercise on cancer-related fatigue in breast cancer survivors: a systematic review and meta-analysis. BMC Cancer. 2015;15:77.
   PubMed Web of Science ®Google Scholar
• Van Vulpen JK, Peeters PH, Velthuis MJ, et al. Effects of physical exercise during adjuvant breast cancer treatment on physical and psychosocial dimensions of cancer-related fatigue: a meta-analysis. Maturitas. 2016;85:104–111.
   PubMed Web of Science ®Google Scholar
• Rogan S, Taeymans J, Luginbuehl H, et al. Therapy modalities to reduce lymphoedema in female breast cancer patients: a systematic review and meta-analysis. Breast Cancer Res Treat. 2016;159:1–14.
   PubMed Web of Science ®Google Scholar
• Matthews H, Grunfeld EA, Turner A. The efficacy of interventions to improve psychosocial outcomes following surgical treatment for breast cancer: a systematic review and meta-analysis. Psychooncology. 2016;26(5):593–607.
   PubMed Web of Science ®Google Scholar
• Lubberding S, Van Uden-Kraan CF, Te Velde EA, et al. Improving access to supportive cancer care through an eHealth application: a qualitative needs assessment among cancer survivors. J Clin Nurs. 2015;24:1367–1379.
   PubMed Web of Science ®Google Scholar
• Ellegaard MB, Grau C, Zachariae R, et al. Fear of cancer recurrence and unmet needs among breast cancer survivors in the first five years. A cross-sectional study. Acta Oncol. 2017;56:1–7.
   PubMed Web of Science ®Google Scholar
• Harrison JD, Young JM, Price MA, et al. What are the unmet supportive care needs of people with cancer? A systematic review. Support Care Cancer. 2009;17:1117–1128.
   PubMed Web of Science ®Google Scholar
• Khatcheressian JL, Hurley P, Bantug E, et al. Breast cancer follow-up and management after primary treatment: American Society of Clinical Oncology clinical practice guideline update. JCO. 2013;31:961–965.
   PubMed Web of Science ®Google Scholar
• Hibbard JH, Stockard J, Mahoney ER, et al. Development of the Patient Activation Measure (PAM): conceptualizing and measuring activation in patients and consumers. Health Serv Res. 2004;39:1005–1026.
   PubMed Web of Science ®Google Scholar
• Carman KL, Dardess P, Maurer M, et al. Patient and family engagement: a framework for understanding the elements and developing interventions and policies. Health Aff (Millwood). 2013;32:223–231.
   PubMed Web of Science ®Google Scholar
• Newman S, Steed L, Mulligan K. Self-management interventions for chronic illness. Lancet. 2004;364:1523–1537.
   PubMed Web of Science ®Google Scholar
• Kuijpers W, Groen WG, Aaronson NK, et al. A systematic review of web-based interventions for patient empowerment and physical activity in chronic diseases: relevance for cancer survivors. J Med Internet Res. 2013;15:e37.
   PubMed Web of Science ®Google Scholar
• van den Berg SW, Gielissen MF, Custers JA, et al. BREATH: web-based self-management for psychological adjustment after primary breast cancer–results of a multicenter randomized controlled trial. *Jco. 2015;33:2763–2771.
   Google Scholar
• van de Wal M, Thewes B, Gielissen M, et al. Efficacy of blended cognitive behavior therapy for high fear of recurrence in breast, prostate, and colorectal cancer survivors: the SWORD Study, a randomized controlled trial. JCO. 2017;35:2173–2183.
   PubMed Web of Science ®Google Scholar
• Beatty LJ, Koczwara B, Rice J, et al. A randomised controlled trial to evaluate the effects of a self-help workbook intervention on distress, coping and quality of life after breast cancer diagnosis. Med J Aust. 2010;193:S68–S73.
   PubMed Web of Science ®Google Scholar
• Duman-Lubberding S, Van Uden-Kraan CF, Jansen F, et al. Feasibility of an eHealth application ”OncoKompas” to improve personalized survivorship cancer care. Support Care Cancer. 2016;24:2163–2171.
   PubMed Web of Science ®Google Scholar
• Van Den Berg SW, Peters EJ, Kraaijeveld JF, et al. Usage of a generic web-based self-management intervention for breast cancer survivors: substudy analysis of the BREATH trial. J Med Internet Res. 2013;15:e170.
   PubMed Web of Science ®Google Scholar
• Duman-Lubberding S, Van Uden-Kraan CF, Peek N, et al. An eHealth application in head and neck cancer survivorship care: health care professionals’ perspectives. J Med Internet Res. 2015;17:e235.
   PubMed Web of Science ®Google Scholar
• Van Uden-Kraan CF, Lubberding S, Verdonck-de Leeuw IM. Abstracts of the 2012 International MASCC/ISOO (Multiple Association of Supportive Care in Cancer/International Society for Oral Oncology) Symposium. New York City, New York, USA. June 28–30, 2012. Support Care Cancer. 2012;20(Suppl 1):1–283.
   PubMedGoogle Scholar
• Lubberding S, Van Uden-Kraan CF, Cuijpers P, et al. Abstracts of the IPOS 15th World Congress of Psycho-Oncology. November 4–8, 2013. Rotterdam, The Netherlands. Psychooncology. 2013;22(Suppl 3):1–374.
   PubMedGoogle Scholar
• Cnossen IC, Van Uden-Kraan CF, Rinkel RN, et al. Multimodal guided self-help exercise program to prevent speech, swallowing, and shoulder problems among head and neck cancer patients: a feasibility study. J Med Internet Res. 2014;16:e74.
   PubMed Web of Science ®Google Scholar
• Kelders SM, Kok RN, Ossebaard HC, et al. Persuasive system design does matter: a systematic review of adherence to web-based interventions. J Med Internet Res. 2012;14:e152.
   PubMed Web of Science ®Google Scholar
• Reichheld FF. The one number you need to grow. Harv Bus Rev. 2003;81:46–54, 124.
   PubMed Web of Science ®Google Scholar
• Krol MW, de Boer D, Delnoij DM, et al. The Net Promoter Score – an asset to patient experience surveys? Health Expect. 2015;18:3099–3109.
   PubMed Web of Science ®Google Scholar
• Aaronson NK, Ahmedzai S, Bergman B, et al. The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst. 1993;85:365–376.
   PubMed Web of Science ®Google Scholar
• Giesinger JM, Kieffer JM, Fayers PM, et al. Replication and validation of higher order models demonstrated that a summary score for the EORTC QLQ-C30 is robust. J Clin Epidemiol. 2016;69:79–88.
   PubMed Web of Science ®Google Scholar
• Fayers P, Bottomley A. EORTC Quality of Life Group, Quality of Life Unit. Quality of life research within the EORTC—the EORTC QLQ-C30. European Organisation for Research and Treatment of Cancer. Eur J Cancer. 2002;38(Suppl 4):S125–S133.
   PubMed Web of Science ®Google Scholar
• McLachlan SA, Devins GM, Goodwin PJ. Validation of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (QLQ-C30) as a measure of psychosocial function in breast cancer patients. Eur J Cancer. 1998;34:510–517.
   PubMed Web of Science ®Google Scholar
• Ishikawa H, Takeuchi T, Yano E. Measuring functional, communicative, and critical health literacy among diabetic patients. Diabetes Care. 2008;31:874–879.
   PubMed Web of Science ®Google Scholar
• van der Vaart R, Drossaert CH, Taal E, et al. Validation of the Dutch functional, communicative and critical health literacy scales. Patient Educ Couns. 2012;89:82–88.
   PubMed Web of Science ®Google Scholar
• Boyes A, Girgis A, Lecathelinais C. Brief assessment of adult cancer patients’ perceived needs: development and validation of the 34-item Supportive Care Needs Survey (SCNS-SF34). J Eval Clin Pract. 2009;15:602–606.
   PubMed Web of Science ®Google Scholar
• McElduff P, Boyes A, Zucca A, et al. The Supportive Care Needs Survey: a guide to administration, scoring and analysis. Newcastle: Centre for Health Research & Psycho-oncology; 2004.
   Google Scholar
• Pope C, Ziebland S, Mays N. Qualitative research in health care. Analysing qualitative data. BMJ. 2000;320:114–116.
   PubMed Web of Science ®Google Scholar
• Rademakers J, Nijman J, van der Hoek L, et al. Measuring patient activation in The Netherlands: translation and validation of the American short form Patient Activation Measure (PAM13). BMC Public Health. 2012;12:577.
   PubMed Web of Science ®Google Scholar
• Maly RC, Frank JC, Marshall GN, et al. Perceived efficacy in patient–physician interactions (PEPPI): validation of an instrument in older persons. J Am Geriatr Soc. 1998;46:889–894.
   PubMed Web of Science ®Google Scholar
• ten Klooster PM, Oostveen JC, Zandbelt LC, et al. Further validation of the 5-item Perceived Efficacy in Patient–Physician Interactions (PEPPI-5) scale in patients with osteoarthritis. Patient Educ Couns. 2012;87:125–130.
   PubMed Web of Science ®Google Scholar
• R Core Team. R: A language and environment for statistical computing. R Foundation for Statistical Computing. Vienna, Austria; 2017.
   Google Scholar
• Fritz CO, Morris PE, Richler JJ. Effect size estimates: current use, calculations, and interpretation. J Exp Psychol Gen. 2012;141:2–18.
   PubMed Web of Science ®Google Scholar
• Cohen J. A power primer. Psychol Bull. 1992;112:155–159.
   PubMed Web of Science ®Google Scholar
• Burnip E, Owen SJ, Barker S, et al. Swallowing outcomes following surgical and non-surgical treatment for advanced laryngeal cancer. J Laryngol Otol. 2013;127:1116–1121.
   PubMed Web of Science ®Google Scholar
• Jacobi I, van der Molen L, Huiskens H, et al. Voice and speech outcomes of chemoradiation for advanced head and neck cancer: a systematic review. Eur Arch Otorhinolaryngol. 2010;267:1495–1505.
   PubMed Web of Science ®Google Scholar
• Piccirillo JF. Importance of comorbidity in head and neck cancer. Laryngoscope. 2000;110:593–602.
   PubMed Web of Science ®Google Scholar
• Beatty L, Binnion C. A systematic review of predictors of, and reasons for, adherence to online psychological interventions. Int J Behav Med. 2016;23:776–794.
   PubMed Web of Science ®Google Scholar
• Liu Z. Reading behavior in the digital environment: changes in reading behavior over the past ten years. J Document. 2005;61:700–712.
   Web of Science ®Google Scholar
• Alexander PA. Reading into the future: competence for the 21st century. Educ Psychol. 2012;47:259–280.
   Web of Science ®Google Scholar
• Husson O, Mols F, van de Poll-Franse L, et al. Variation in fatigue among 6011 (long-term) cancer survivors and a normative population: a study from the population-based PROFILES registry. Support Care Cancer. 2015;23:2165–2174.
   PubMed Web of Science ®Google Scholar
• Mols F, Beijers AJ, Vreugdenhil G, et al. Chemotherapy-induced peripheral neuropathy, physical activity and health-related quality of life among colorectal cancer survivors from the PROFILES registry. J Cancer Surviv. 2015;9:512–522.
   PubMed Web of Science ®Google Scholar
• Williams LJ, Kunkler IH, King CC, et al. A randomised controlled trial of post-operative radiotherapy following breast-conserving surgery in a minimum-risk population. Quality of life at 5 years in the PRIME trial. Health Technol Assess. 2011;15:i–xi, 1–57.
   PubMed Web of Science ®Google Scholar
• McCorkle R, Ercolano E, Lazenby M, et al. Self-management: enabling and empowering patients living with cancer as a chronic illness. CA Cancer J Clin. 2011;61:50–62.
   PubMed Web of Science ®Google Scholar
• Cimprich B, Janz NK, Northouse L, et al. Taking CHARGE: a self-management program for women following breast cancer treatment. Psychooncology. 2005;14:704–717.
   PubMed Web of Science ®Google Scholar
• Solomon M, Wagner SL, Goes J. Effects of a Web-based intervention for adults with chronic conditions on patient activation: online randomized controlled trial. J Med Internet Res. 2012;14:e32.
   PubMed Web of Science ®Google Scholar
• Boele FW, van Uden-Kraan CF, Hilverda K, et al. Attitudes and preferences toward monitoring symptoms, distress, and quality of life in glioma patients and their informal caregivers. Support Care Cancer. 2016;24:3011–3022.
   PubMed Web of Science ®Google Scholar