Psychological well-being in adults with spinal muscular atrophy: the contribution of participation and psychological needs

References

• Kolb SJ, Kissel JT. Spinal muscular atrophy. Neurol Clin. 2015;33:831–846.
   PubMed Web of Science ®Google Scholar
• Verhaart IEC, Robertson A, Wilson IJ, et al. Prevalence, incidence and carrier frequency of 5q-linked spinal muscular atrophy – a literature review. Orphanet J Rare Dis. 2017;12:124.
   PubMed Web of Science ®Google Scholar
• Wadman RI, Wijngaarde CA, Stam M, et al. Muscle strength and motor function throughout life in a cross-sectional cohort of 180 patients with spinal muscular atrophy types 1c-4. Eur J Neurol. 2018;25:512–518.
   PubMed Web of Science ®Google Scholar
• Darras BT. Spinal muscular atrophies. Pediatr Clin North Am. 2015;62:743–766.
   PubMed Web of Science ®Google Scholar
• Chiriboga CA, Swoboda KJ, Darras BT, et al. Results from a phase 1 study of nusinersen (ISIS-SMN(Rx)) in children with spinal muscular atrophy. Neurology. 2016;86:890–897.
   PubMed Web of Science ®Google Scholar
• Finkel RS, Chiriboga CA, Vajsar J, et al. Treatment of infantile-onset spinal muscular atrophy with nusinersen: a phase 2, open-label, dose-escalation study. Lancet. 2016;388:3017–3026.
   PubMed Web of Science ®Google Scholar
• Finkel RS, Mercuri E, Darras BT, et al. Nusinersen versus sham control in infantile-onset spinal muscular atrophy. N Engl J Med. 2017;377:1723–1732.
   PubMed Web of Science ®Google Scholar
• Mercuri E, Darras BT, Chiriboga CA, et al. Nusinersen versus sham control in later-onset spinal muscular atrophy. N Engl J Med. 2018;378:625–635.
   PubMed Web of Science ®Google Scholar
• Finkel RS, Mercuri E, Meyer OH, et al. Diagnosis and management of spinal muscular atrophy: part 2: pulmonary and acute care; medications, supplements and immunizations; other organ systems; and ethics. Neuromuscul Disord. 2018;28:197–207.
   PubMed Web of Science ®Google Scholar
• Mercuri E, Finkel RS, Muntoni F, et al. Diagnosis and management of spinal muscular atrophy: part 1: recommendations for diagnosis, rehabilitation, orthopedic and nutritional care. Neuromuscul Disord. 2018;28:103–115.
   PubMed Web of Science ®Google Scholar
• Wang CH, Finkel RS, Bertini ES, et al. Consensus statement for standard of care in spinal muscular atrophy. J Child Neurol. 2007;22:1027–1049.
   PubMed Web of Science ®Google Scholar
• Kruitwagen-Van Reenen ETH, Wadman RI, Visser-Meily JM, et al. Correlates of health related quality of life in adult patients with spinal muscular atrophy. Muscle Nerve. 2016;54:850–855.
   PubMed Web of Science ®Google Scholar
• Iannaccone ST, Hynan LS, Morton A, et al. The PedsQL (TM) in pediatric patients with spinal muscular atrophy: feasibility, reliability, and validity of the Pediatric Quality of Life Inventory (TM) Generic Core Scales and Neuromuscular Module. Neuromuscular Disord. 2009;19:805–812.
   PubMed Web of Science ®Google Scholar
• de Oliveira CM, Araujo APDC. Self-reported quality of life has no correlation with functional status in children and adolescents with spinal muscular atrophy. Eur J Paediatr Neurol. 2011;15:36–39.
   PubMed Web of Science ®Google Scholar
• Klug C, Schreiber-Katz O, Thiele S, et al. Disease burden of spinal muscular atrophy in Germany. Orphanet J Rare Dis. 2016;11:58.
   PubMed Web of Science ®Google Scholar
• Post M, Noreau L. Quality of life after spinal cord injury. J Neurol Phys Ther. 2005;29:139–146.
   PubMedGoogle Scholar
• Post MW. Definitions of quality of life: what has happened and how to move on. Top Spinal Cord Inj Rehabil. 2014;20:167–180.
   PubMedGoogle Scholar
• Post MW, de Witte LP, van Asbeck FW, et al. Predictors of health status and life satisfaction in spinal cord injury. Arch Phys Med Rehabil. 1998;79:395–401.
   PubMed Web of Science ®Google Scholar
• Deci EL, Ryan RM. The “what” and “why” of goal pursuits: human needs and the self-determination of behavior. Psychol Inquiry. 2000;11:227–268.
   Web of Science ®Google Scholar
• Heo S, Moser DK, Riegel B, et al. Testing a published model of health-related quality of life in heart failure. J Card Fail. 2005;11:372–379.
   PubMed Web of Science ®Google Scholar
• McDougall J, Wright V, Rosenbaum P. The ICF model of functioning and disability: incorporating quality of life and human development. Dev Neurorehabil. 2010;13:204–211.
   PubMed Web of Science ®Google Scholar
• Reis HT, Sheldon KM, Gable SL, et al. Daily well-being: the role of autonomy, competence, and relatedness. Pers Soc Psychol Bull. 2000;26:419–435.
   Web of Science ®Google Scholar
• Sheldon KM, Ryan R, Reis HT. What makes for a good day? Competence and autonomy in the day and in the person. Pers Soc Psychol Bull. 1996;22:1270–1279.
   Web of Science ®Google Scholar
• Diener E, Emmons RA, Larsen RJ, et al. The satisfaction with life scale. J Pers Assess. 1985;49:71–75.
   PubMed Web of Science ®Google Scholar
• Franck E, De Raedt R, Barbez C, et al. Psychometric properties of the Dutch Rosenberg Self-Esteem Scale. Psychol Belg. 2008;48:25–34.
   Web of Science ®Google Scholar
• Watson D, Clark LA, Tellegen A. Development and validation of brief measures of positive and negative affect: the PANAS scales. J Pers Soc Psychol. 1988;54:1063–1070.
   PubMed Web of Science ®Google Scholar
• Arrindell WA, Heesink J, Feij JA. The Satisfaction With Life Scale (SWLS): appraisal with 1700 healthy young adults in The Netherlands. Personal Individ Differ. 1999;26:815–826.
   Web of Science ®Google Scholar
• Engelen U, De Peuter S, Victoir A, et al. Verdere validering van de Positive and Negative Affect Schedule (PANAS) en vergelijking van twee Nederlandstalige versies. Gedrag en Gezondheid. 2006;34:61–70.
   Google Scholar
• Peeters FPML, Ponds RWHM, Vermeeren MTG. Affectiviteit en zelfbeoordeling van depressie en angst. Tijdschrift Voor Psychiatr. 1996;38:240–250.
   Google Scholar
• Schmitt DP, Allik J. Simultaneous administration of the Rosenberg Self-Esteem Scale in 53 nations: exploring the universal and culture-specific features of global self-esteem. J Pers Soc Psychol. 2005;89:623–642.
   PubMed Web of Science ®Google Scholar
• van Loon AJM, Tijhuis M, Surtees PG, et al. Personality and coping: their relationship with lifestyle risk factors for cancer. Personal Individ Differ. 2001;31:541–553.
   Web of Science ®Google Scholar
• Post MWM, van der Zee CH, Hennink J, et al. Validity of the Utrecht Scale for Evaluation of Rehabilitation-Participation. Disabil Rehabil. 2012;34:478–485.
   PubMed Web of Science ®Google Scholar
• Chen BW, Vansteenkiste M, Beyers W, et al. Basic psychological need satisfaction, need frustration, and need strength across four cultures. Motiv Emot. 2015;39:216–236.
   Web of Science ®Google Scholar
• Chen BW, Van Assche J, Vansteenkiste M, et al. Does psychological need satisfaction matter when environmental or financial safety are at risk? J Happiness Stud. 2015;16:745–766.
   Web of Science ®Google Scholar
• Kocova H, Dvorackova O, Vondracek P, et al. Health-related quality of life in children and adolescents with spinal muscular atrophy in the Czech Republic. Pediatr Neurol. 2014;50:591–594.
   PubMed Web of Science ®Google Scholar
• Gill TM, Feinstein AR. A critical appraisal of the quality of quality-of-life measurements. JAMA. 1994;272:619–626.
   PubMed Web of Science ®Google Scholar
• Huber M, Knottnerus JA, Green L, et al. How should we define health? BMJ. 2011;343:d4163.
   PubMed Web of Science ®Google Scholar
• Huber M, van Vliet M, Giezenberg M, et al. Towards a 'patient-centred' operationalisation of the new dynamic concept of health: a mixed methods study. BMJ Open. 2016;6:e010091.
   PubMed Web of Science ®Google Scholar
• Moons P, Budts W, De Geest S. Critique on the conceptualisation of quality of life: a review and evaluation of different conceptual approaches. Int J Nurs Stud. 2006;43:891–901.
   PubMed Web of Science ®Google Scholar
• Levasseur M, Desrosiers J, Noreau L. Is social participation associated with quality of life of older adults with physical disabilities? Disabil Rehabil. 2004;26:1206–1213.
   PubMed Web of Science ®Google Scholar
• Muller R, Peter C, Cieza A, et al. Social skills: a resource for more social support, lower depression levels, higher quality of life, and participation in individuals with spinal cord injury? Arch Phys Med Rehabil. 2015;96:447–455.
   PubMed Web of Science ®Google Scholar
• Yeung P, Towers A. An exploratory study examining the relationships between the personal, environmental and activity participation variables and quality of life among young adults with disabilities. Disabil Rehabil. 2014;36:63–73.
   PubMed Web of Science ®Google Scholar
• Ueda S, Okawa Y. The subjective dimension of functioning and disability: what is it and what is it for? Disabil Rehabil. 2003;25:596–601.
   PubMed Web of Science ®Google Scholar
• Edmunds J, Ntoumanis N, Duda JL. Adherence and well-being in overweight and obese patients referred to an exercise on prescription scheme: a self-determination theory perspective. Psychol Sport Exerc. 2007;8:722–740.
   Web of Science ®Google Scholar
• Senécal C, Nouwen A, White D. Motivation and dietary self-care in adults with diabetes: are self-efficacy and autonomous self-regulation complementary or competing constructs? Health Psychol. 2000;19:452–457.
   PubMed Web of Science ®Google Scholar
• Williams GC, McGregor HA, King D, et al. Variation in perceived competence, glycemic control, and patient satisfaction: relationship to autonomy support from physicians. Patient Educ Couns. 2005;57:39–45.
   PubMed Web of Science ®Google Scholar
• Ho HM, Tseng YH, Hsin YM, et al. Living with illness and self-transcendence: the lived experience of patients with spinal muscular atrophy. J Adv Nurs. 2016;72:2695–2705.
   PubMed Web of Science ®Google Scholar
• Lamb C, Peden A. Understanding the experience of living with spinal muscular atrophy: a qualitative description. J Neurosci Nurs. 2008;40:250–256.
   PubMed Web of Science ®Google Scholar
• Qian Y, McGraw S, Henne J, et al. Understanding the experiences and needs of individuals with spinal muscular atrophy and their parents: a qualitative study. BMC Neurol. 2015;15:217.
   PubMed Web of Science ®Google Scholar
• Dolan P, Peasgood T, White M. Do we really know what makes us happy? A review of the economic literature on the factors associated with subjective well-being. J Econ Psychol. 2008;29:94–122.
   Web of Science ®Google Scholar
• Quinlivan EB, Messer LC, Adimora AA, et al. Experiences with HIV testing, entry, and engagement in care by HIV-infected women of color, and the need for autonomy, competency, and relatedness. AIDS Patient Care STDs. 2013;27:408–415.
   PubMed Web of Science ®Google Scholar
• Ng JYY, Ntoumanis N, Thogersen-Ntoumani C, et al. Self-determination theory applied to health contexts: a meta-analysis. Perspect Psychol Sci. 2012;7:325–340.
   PubMedGoogle Scholar
• Chen MF, Chang RE, Tsai HB, et al. Effects of perceived autonomy support and basic need satisfaction on quality of life in hemodialysis patients. Qual Life Res. 2018;27:765–773.
   PubMed Web of Science ®Google Scholar
• Duda JL, Williams GC, Ntoumanis N, et al. Effects of a standard provision versus an autonomy supportive exercise referral programme on physical activity, quality of life and well-being indicators: a cluster randomised controlled trial. Int J Behav Nutr Phys Act. 2014;11:10.
   PubMed Web of Science ®Google Scholar
• Williams GC, Deci EL. Activating patients for smoking cessation through physician autonomy support. Med Care. 2001;39:813–823.
   PubMed Web of Science ®Google Scholar
• Bandura A. Self-efficacy: toward a unifying theory of behavioral change. Psychol Rev. 1977;84:191–215.
   PubMed Web of Science ®Google Scholar
• Patrick H, Williams GC. Self-determination theory: its application to health behavior and complementarity with motivational interviewing. Int J Behav Nutr Phys Act. 2012;9:18.
   PubMed Web of Science ®Google Scholar
• Dany A, Rapin A, Reveillere C, et al. Exploring quality of life in people with slowly-progressive neuromuscular disease. Disabil Rehabil. 2017;39:1262–1270.
   PubMed Web of Science ®Google Scholar