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Group intervention programs and their impact on well-being and quality-of-life for adults living with a rare or orphan disease – realist review of literature

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Pages 2567-2577 | Received 22 Nov 2021, Accepted 17 Jul 2022, Published online: 18 Aug 2022

References

  • Insern. Orphanet 2021. April 7. Available from: https://www.orpha.net/consor/cgi-bin/index.php?lng=FR.
  • Caputo A. Exploring quality of life in Italian patients with rare disease: a computer-aided content analysis of illness stories. Psychol, Health Med. 2014;19(2):211–221.
  • von der Lippe C, Diesen PS, Feragen KB. Living with a rare disorder: a systematic review of the qualitative literature. Mol Genet Genomic Med. 2017;5(6):758–773.
  • Bayliss M, McCausland KL, Guthrie SD, et al. The burden of amyloid light chain amyloidosis on health-related quality of life. Orphanet J Rare Dis. 2017;12(1):15.
  • Bogart KR, Irvin VL. Health-related quality of life among adults with diverse rare disorders. Orphanet J Rare Dis. 2017;12(1):177.
  • Bosch AM, Burlina A, Cunningham A, et al. Assessment of the impact of phenylketonuria and its treatment on quality of life of patients and parents from seven european countries. Orphanet J Rare Dis. 2015;10(1):80.
  • Calvert M, Pall H, Hoppitt T, et al. Health-related quality of life and supportive care in patients with rare long-term neurological conditions. Qual Life Res. 2013;22(6):1231–1238.
  • Hanisch M, Wiemann S, Bohner L, et al. Association between oral health-related quality of life in people with rare diseases and their satisfaction with dental care in the health system of the federal republic of Germany. IJERPH. 2018;15(8):1732.
  • Poon J-L, Doctor JN, Nichol MB. Longitudinal changes in health-related quality of life for chronic diseases: an example in hemophilia A. J Gen Intern Med. 2014;29(S3):760–766.
  • López-Bastida J, Oliva-Moreno J, Linertová R, et al. Social/economic costs and health-related quality of life in patients with rare diseases in Europe. Eur J Health Econ. 2016;17(S1):1–5.
  • Jaeger G, Rojvik A, Berglund B. Participation in society for people with a rare diagnosis. Disabil Health J. 2015;8(1):44–50.
  • Price VE, Klaassen RJ, Bolton-Maggs PH, et al. Measuring disease-specific quality of life in rare populations: a practical approach to cross-cultural translation. Health Qual Life Outcomes. 2009;7:92.
  • Adams D, Clarke S, Griffith G, et al. Mental health and well-being in mothers of children with rare genetic syndromes showing chronic challenging behavior: a cross-sectional and longitudinal study. Am J Intellect Dev Disabil. 2018;123(3):241–253.
  • Chong K, Unruh M. Why does quality of life remain an under-investigated issue in chronic kidney disease and why is it rarely set as an outcome measure in trials in this population? Nephrol Dial Transpl. 2017;32(suppl_2):ii47–ii52.
  • Gilmore RE. Living with pityriasis rubra pilaris. Dermatol Nurs. 2005;17(5):378–380.
  • Griffiths J, Willard C, Burgess A, et al. Meeting the ongoing needs of survivors of rarer cancer. Eur J Oncol Nurs. 2007;11(5):434–441.
  • Joachim G, Acorn S. Life with a rare chronic disease: the scleroderma experience. J Adv Nurs. 2003;42(6):598–606.
  • Mori Y, Downs J, Wong K, et al. Impacts of caring for a child with the CDKL5 disorder on parental wellbeing and family quality of life. Orphanet J Rare Dis. 2017;12(1):16.
  • Aho AC, Hultsjö S, Hjelm K. Young adults' experiences of living with recessive limb-girdle muscular dystrophy from a salutogenic orientation: an interview study. Disabil Rehabil. 2015;37(22):2083–2091.
  • Bailey PK, Hamilton AJ, Clissold RL, et al. Young adults' perspectives on living with kidney failure: a systematic review and thematic synthesis of qualitative studies. BMJ Open. 2018;8(1):e019926.
  • Mizara A, Papadopoulos L, McBride SR. Core beliefs and psychological distress in patients with psoriasis and atopic eczema attending secondary care: the role of schemas in chronic skin disease. Brit J Dermatol. 2012;166(5):986–993. Epub 2012/01/04. 10.1111/j.1365-2133.2011.10799.x.
  • Carpenter DM, Thorpe CT, Alexander DS, et al. The relationship between social support, social constraint, and psychological adjustment for patients with rare autoimmune disease. CRR. 2016;12(3):232–238.
  • Le Regroupement Québécois des Maladies Orphelines. Proposition de stratégie pour les maladies rares au Québec. 2019.
  • Nunn R. It’s not all in my head!” - the complex relationship between rare diseases and mental health problems. Orphanet J Rare Dis. 2017;12(1):29.
  • Alderson SL, Foy R, House A. Understanding depression associated with chronic physical illness: a Q-methodology study in primary care. Br J Gen Pract. 2015;65(635):e401-8–e408.
  • Nicoloro-SantaBarbara J, Lobel M, Wolfe D. Psychosocial impact of mast cell disorders: Pilot investigation of a rare and understudied disease. J Health Psychol. 2017;22(10):1277–1288.
  • Garrino L, Picco E, Finiguerra I, et al. Living with and treating rare diseases. Qual Health Res. 2015;25(5):636–651.
  • Germeni E, Vallini I, Bianchetti MG, et al. Reconstructing normality following the diagnosis of a childhood chronic disease: does “rare” make a difference? Eur J Pediatr. 2018;177(4):489–495.
  • Detoudeville T. L'errance diagnostique dans les maladies rares2018.
  • Cottet C. L’errance diagnostique: le point de vue des malades. Med Sci(Paris). 2018;34:43–44.
  • Kühnle L, Mücke U, Lechner WM, et al. Development of a social network for people without a diagnosis (RarePairs): evaluation study. J Med Internet Res. 2020;22(9):e21849.
  • Pierucci P, Lenato GM, Suppressa P, et al. A long diagnostic delay in patients with hereditary haemorrhagic telangiectasia: a questionnaire-based retrospective study. Orphanet J Rare Dis. 2012;7:33.
  • Markle GL, Attell BK, Treiber LA. Dual, yet dueling illnesses: multiple chronic illness experience at midlife. Qual Health Res. 2015;25(9):1271–1282. Epub 2014/11/26.
  • Schwartz CE, Michael W, Rapkin BD. Resilience to health challenges is related to different ways of thinking: mediators of physical and emotional quality of life in a heterogeneous rare-disease cohort. Qual Life Res. 2017;26(11):3075–3088.
  • Castro R, Senecat J, de Chalendar M, et al. Bridging the gap between health and social care for rare diseases: Key issues and innovative solutions. Adv Exp Med Biol. 2017;1301:605–627.
  • Pawson R. Evidence-based policy: a realist perspective: sage2006.
  • Wong G, Greenhalgh T, Westhorp G, et al. RAMESES publication standards: realist syntheses. BMC Med. 2013;11(1):21.
  • Lantheaume S, Montagne M, Shankland R. [Intervention focused on resources to reduce anxiety and depression disorders in cancer patients: a pilot study]. Encephale. 2020;46(1):13–22.
  • Zernicke KA, Campbell TS, Speca M, et al. The eCALM trial-eTherapy for cancer appLying mindfulness: online mindfulness-based cancer recovery program for underserved individuals living with cancer in Alberta: protocol development for a randomized wait-list controlled clinical trial. BMC Complement Altern Med. 2013;13:34.
  • Dinkel A, Herschbach P, Berg P, et al. Determinants of long-term response to group therapy for dysfunctional fear of progression in chronic diseases. Behav Med. 2012;38(1):1–5.
  • Jasper K, Weise C, Conrad I, et al. Internet-based guided self-help versus group cognitive behavioral therapy for chronic tinnitus: a randomized controlled trial. Psychother Psychosom. 2014;83(4):234–246.
  • McCracken LM, Gutiérrez-Martínez O. Processes of change in psychological flexibility in an interdisciplinary group-based treatment for chronic pain based on acceptance and commitment therapy. Behav Res Ther. 2011;49(4):267–274.
  • Moschen R, Riedl D, Schmidt A, et al. The development of acceptance of chronic tinnitus in the course of a cognitive-behavioral group therapy. Z Psychosom Med Psychother. 2015;61(3):238–246.
  • Smith SK, O'Donnell JD, Abernethy AP, et al. Evaluation of Pillars4life: a virtual coping skills program for cancer survivors. Psychooncology. 2015;24(11):1407–1415.
  • Rakovec-Felser Z. The biopsychosocial model of treatment the patients with inflammatory chronic bowel disease. Collegium Antropologicum. 2011;35(2):453–461.
  • Arends RY, Bode C, Taal E, et al. A goal management intervention for polyarthritis patients: rationale and design of a randomized controlled trial. BMC Musculoskelet Disord. 2013;14:239.
  • Casañas R, Martín Royo J, Fernandez-San-Martín MI, et al. Effectiveness of a psychoeducation group intervention conducted by primary healthcare nurses in patients with depression and physical comorbidity: study protocol for a randomized, controlled trial. BMC Health Serv Res. 2019;19(1):427.
  • Ruesch M, Helmes AW, Bengel J. Immediate help through group therapy for patients with somatic diseases and depressive or adjustment disorders in outpatient care: study protocol for a randomized controlled trial. Trials. 2015;16:287.
  • Shaw WS, Besen E, Pransky G, et al. Manage at work: a randomized, controlled trial of a self-management group intervention to overcome workplace challenges associated with chronic physical health conditions. BMC Public Health. 2014;14:515.
  • Arefnasab Z, Babamahmoodi A, Babamahmoodi F, et al. Mindfulness-based stress reduction (MBSR) and its effects on psychoimmunological factors of chemically pulmonary injured veterans. Iran J Allergy, Asthma Immunol. 2016;15(6):476–486.
  • Gans JJ, O’Sullivan P, Bircheff V. Mindfulness based tinnitus stress reduction pilot study: a symptom perception-shift program. Mindfulness. 2014;5(3):322–333.
  • McGuire KB, Stojanovic-Radic J, Strober L, et al. Development and effectiveness of a psychoeducational wellness program for people with multiple sclerosis: description and outcomes. Int J MS Care. 2015;17(1):1–8.
  • Berens S, Stroe-Kunold E, Kraus F, et al. Pilot-RCT of an integrative group therapy for patients with refractory irritable bowel syndrome (ISRCTN02977330). J Psychosom Res. 2018;105:72–79.
  • Carter S, Greenberg J, Funes CJ, et al. Effects of a mind-body program on symptoms of depression and perceived stress among adults with neurofibromatosis type 2 who are deaf: a live-video randomized controlled trial. Complement Ther Med. 2021;56:102581.
  • Greenberg J, Carter S, Lester E, et al. Cultivating resiliency in patients with neurofibromatosis 2 who are deafened or have severe hearing loss: a live‑video randomized control trial. J Neurooncol. 2019;145(3):561–569.
  • Weinert C, Cudney S, Comstock B, et al. Computer intervention impact on psychosocial adaptation of rural women with chronic conditions. Nurs Res. 2011;60(2):82–91.
  • Conrad I, Kleinstäuber M, Jasper K, et al. The changeability and predictive value of dysfunctional cognitions in cognitive behavior therapy for chronic tinnitus. Int J Behav Med. 2015;22(2):239–250. 50.
  • Kreuzer PM, Goetz M, Holl M, et al. Mindfulness-and body-psychotherapy-based group treatment of chronic tinnitus: a randomized controlled pilot study. BMC Complement Altern Med. 2012;12:235.
  • McKenna L, Marks EM, Hallsworth CA, et al. Mindfulness-based cognitive therapy as a treatment for chronic tinnitus: a randomized controlled trial. Psychother Psychosom. 2017;86(6):351–361.
  • Rutan JS. Reasons for suggesting group psychotherapy to patients. APT. 2021;74(2):67–70. appi. psychotherapy. 20200032.
  • Bradbury H. The sage handbook of action research. CA, USA: Sage; 2015.
  • Fuller T, Cima R, Langguth B, et al. Cognitive behavioural therapy for tinnitus. Cochrane Database Syst Rev. 2020;1:CD012614.
  • Carpenter KM, Stoner SA, Mundt JM, et al. An online self-help CBT intervention for chronic lower back pain. Clin J Pain. 2012;28(1):14–22.
  • Li J, Jin J, Xi S, et al. Clinical efficacy of cognitive behavioral therapy for chronic subjective tinnitus. Am J Otolaryngol. 2019;40(2):253–256.
  • Dwyer AA, Quinton R, Morin D, et al. Identifying the unmet health needs of patients with congenital hypogonadotropic hypogonadism using a web-based needs assessment: implications for online interventions and peer-to-peer support. Orphanet J Rare Dis. 2014;9:83.
  • Poole JL, Bradford JD, Siegel P. Effectiveness of occupational therapy interventions for adults with systemic lupus erythematosus: a systematic review. Am J Occup Ther. 2019;73(4):7304205020p1–730420502p21.
  • Davis SP, Bolin LP, Crane PB, et al. Non-pharmacological interventions for anxiety and depression in adults with inflammatory bowel disease: a systematic review and meta-analysis. Front Psychol. 2020;11:538741.
  • Jelin E, Granum V, Eide H. Experiences of a web-based nursing intervention–interviews with women with chronic musculoskeletal pain. Pain Manag Nurs. 2012;13(1):2–10. Epub 2012/02/22.
  • Jongen PJ, Ter Veen G, Lemmens W, et al. The interactive web-based program MS monitor for self-management and multidisciplinary care in persons with multiple sclerosis: quasi-experimental study of short-term effects on patient empowerment. J Med Internet Res. 2020;22(3):e14297.
  • Pozza A, Dèttore D. Drop-out and efficacy of group versus individual cognitive behavioural therapy: what works best for obsessive-compulsive disorder? a systematic review and meta-analysis of direct comparisons. Psychiatry Res. 2017;258:24–36.
  • Lockwood C, Page T, Conroy-Hiller T. Comparing the effectiveness of cognitive behaviour therapy using individual or group therapy in the treatment of depression. JBI Libr Syst Rev. 2004;2(5):1–206.
  • Santoft F, Axelsson E, Öst L-G, et al. Cognitive behaviour therapy for depression in primary care: systematic review and Meta-analysis. Psychol Med. 2019;49(8):1266–1274.
  • Marcellus L. Are we missing anything? pursuing research on attrition. Can J Nurs Res Arch. 2004;36(3):82–98.
  • Neves K, Amaral OB. Science forum: addressing selective reporting of experiments through predefined exclusion criteria. Elife. 2020;9:e56626.

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