Quality of life in adolescents with bipolar disorder - Nätverksmöte - Barn och ungdomspsykiatrin (BUP), 4-5 Oktober
←
→
Page content transcription
If your browser does not render page correctly, please read the page content below
Nätverksmöte - Barn och ungdomspsykiatrin (BUP), 4-5 Oktober
Quality of life
in adolescents
with bipolar disorder
Carl Ragazan, RN, MPH
tjena!
briefing
briefing
general program
❖ Day 1
❖ Background & theory
❖ Integrating quality of life
(QoL) and clinical practice
❖ Day 2
❖ Självskattningsformulär
för Livskvalitet (LkBS)
❖ Workgroup seminars;
Appreciative Inquiry
Approach, group
presentations
background & theory - themes
❖ Bipolar disorder in
adolescence
❖ Quality of life (QoL) as a
field, as a measurable
construct
❖ Application to adolescents
❖ Merits & challenges of
assessing QoL
❖ Advances in the literaturebipolar disorder & adolescence
❖ Variable course of illness marked by oscillations in mood, energy & functioning capacity
❖ Recurrent & heterogenous symptomatology
❖ 20% syndromal, 40% subsyndromal, 40% euthymic1
❖ Developmental considerations; transition into adulthood & managing chronicity
❖ High rate of comorbidities
❖ e.g., anxiety, ADHD, sleep, cognitive, conduct impairments, etc2
❖ Diagnostic overlap/(in)stability; controversies3
❖ Estimated prevalence 1-4%4; study designs, under/over-estimates…
❖ Pharmacological & psychosocial therapies
❖ Marked disability in life domains (e.g., academic, social relations) & risk for self-harm
❖ WHO ranked bipolar disorder as the 4th leading cause of disability
among youth age 15-245Local clinical presentations? General impressions from working with adolescents with bipolar disorder at your local clinics?
Quality of Life???
Philosophical underpinnings guiding a definition for
Quality of life (QoL) Parfit6; Morton et al.7
❖ Hedonism - positive mental states
(e.g., happiness) & avoidance of
negative mental states leads to
good QoL
❖ Desire-satisfaction - QoL achieved
when one has many satisfied wants
& few unsatisfied wants
❖ Objective list theories - A number
of universal human needs
contribute to QoL
❖ Ambiguous directionality; are
variables causal OR indicators?Quality of a life - a common definition QoL as the “[youth’s] perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns” –World Health Organization8
Quality of a life (QoL) versus Health-related quality of life (HrQoL) HrQoL as “a [youth]’s goals, expectations, standards or concerns about their overall health and health-related domains”. – WHO8; Fayed et al.9 QoL “as a multidimensional subjective concept that includes social, emotional, cognitive, and physical functioning [and] cultural aspects of the child and family, while HrQoL incorporates measures of physical symptoms, functional status and disease impact on psychological and social functioning” – Haverman et al.10
Functioning vs. HrQoL vs. QoL Fayed et al.9
Ferrans et al.’s adaption of the Wilson & Cleary (Hr)QoL model11
QoL then relates to… Morton et al.7 Functionning deviance from normative standards Health role of illness & symptoms Subjective experience satisfaction with life’s position Wellbeing Positive (emotional) experiences that extend beyond health & symptoms
Value of considering QoL in practice?
Value of considering QoL in practice?
1. Unravel the true impact of mental disorders; resource allocation?
2. De-stigmatizing; reverts focus from impairment to improvement
3. More important, meaningful, and understandable than
psychopathology
4. Facilitates communication between patients & clinicians
5. Guides treatment plans derived from priorities and perceptions;
potential to improve adherence
6. Reduction of clinical symptoms/impairment ≠ improved QoL
7. Recovery-orientated; patient partnerships, greater patient agency
Jonsson et al.12
8. Predict future mood episodes? Weinstock & Miller.13
9. Predict self-harm behaviours in adolescents? Parker et al.14Assessing & quantifying QoL in BD… generic adult instruments?
Morton et al.7
1. Short Form Survey (SF-36) & its derivations (e.g., SF-12, -6D)Assessing & quantifying QoL in BD… generic adult instruments?
Morton et al.7
2. World Health Organization Quality of Life (WHOQoL) 100 items/BREF 26 itemsConsiderations for adolescent instruments?
Question! What should we be mindful about when selecting an
instrument to measure QoL in adolescents?
e.g.
- items: abstractions/complexity - applicability to age, developmental stage,
culture-bound?
- cognitive capacity: instructions, reading length, layout; recall duration;
response format - risk of response set?
- BD influence: affective bias? (hypo)mania inflate self-reports? Depression
negatively biases result? Still, a valid contributor?
- clinical integration - workflow? Goals - screening, monitoring, treatment
outcomes, research/trials?
- proxies - caregiver? clinician? dis(agreement); self-report the gold standardAssessing & quantifying QoL in BD… generic adolescent instruments 1. Pediatric Quality of Life Inventory (PedsQL 4.0) ❖ Brief (23 items); physical, emotional, social & school functioning ❖ physical & psychosocial summaries ❖ ~ 4 minute completion time ❖ Developmentally appropriate; child self-report; parent proxy; different age ranges ❖ Generic and condition-specific modules (none for BD) ❖ Translated and psychometrically test for Swedish adolescents (Petersen et al.15)
Assessing & quantifying QoL in BD… generic adolescent instruments 2. KINDL-(R) ❖ 24 items; physical, emotional, self-esteem, family, peer & academic domains ❖ Developmentally appropriate; child self-report; parent proxy; different age ranges ❖ Generic and condition-specific modules (none for BD) ❖ Translated for Swedish adolescents and their caregivers; psychometric properties unknown
QoL in adolescence - BD versus other conditions
❖ Compared QoL in youth with BD v. youth with other somatic and psychiatric conditions
❖ Unique effects of BD subtypes adjusted for sociodemographic factors & comorbidity
❖ 529 youth-caregiver dyads; youth aged 8-18, USA - 2 sites
❖ BDI, BDII, BD NOS, cyclothymic
❖ KINDL (QoL) instrument (caregiver proxy) v. published benchmarks
❖ Six domains: physical, emotional, self-esteem, family, friends & schoolfindings… Freeman et al.16
❖ Youth with BD had significantly lower total QoL scores than healthy controls, asthma,
obesity, eczema, arthritis, those who had heart surgery as infants, and who were
oxygen dependent (P < 0.05)
❖ Lower domain-specific scores (except on physical cf. oxygen dependent youth)
❖ Depressive/hypomanic/mixed symptoms were associated with decreased total QoL
after controlling for age, gender, ethnicity, site, and number of comorbidities
❖ Depressive > hypomania or mixed states as per adult literature
❖ Additionally, adolescents’ QoL lower than children; girls’ QoL lower than boys
Limitations
- Selection bias
- Caregiver-reported KINDL; discordance, only mild correlationsfindings… Freeman et al.16
Youth experiences of assessments…
❖ Semi-structured interviews, n = 25; ages 10-17 with chronic (somatic) conditions
❖ Four outpatient departments; Southern Sweden
❖ DISABKIDS Chronic Generic Measure - 37
❖ Six domains: Independence, Inner-strength (emotions), Social inclusion,
equality, physical ability & treatmentfindings… Peterson et al.17
“Confirming my health”
“Providing insights about
“Opportunities for improving my health ”
health which constitute
motivation for change”
“Increasing my knowledge about health ”
“Discovering my variation over time ”findings cont’d… Peterson et al.17
“Sharing with healthcare professionals”
“Encouraging if outcomes are
requested & discussed”
“Obtaining cause-related explanations ”
“Receiving feedback for support”generic versus condition-specific measures
❖ Acknowledges the unique course of
the illness; specific life areas
affected?
❖ Can influence identity/sense of
self - especially in adolescence
❖ Role of (hypo)manic symptoms
❖ Maximize clinical sensitivity;
responses to interventions
❖ Overlap; other psychiatric, somatic
conditions & general populationGoals for a bipolar-specific QoL instrument
1. Effective across all mood states:
depression, hypomania, mania, mixed &
euthymia
2. Effective across all diagnostic categories:
BDI, BDII, BD NOS
3. Concise for routine clinical care, but
psychometrically sound
Michalak & Murray18 4. Sensitive to QoL changes from
pharmacological & psychosocial interventions(QoL.BD) Michalak & Murray18
Quality of Life in Bipolar Disorder scale (QoL.BD)
• 4-year mixed-methods: bottom-up approach - community-based participatory research
• BD community item generation; interviews, lit. review; preliminary domains
• People with lived experience item reduction; clarity, applicability, importance; pilots
• Field study; n=225 in/outpatients
• Re-test smaller sample (n=93); SF-36; Q-LES-Q, SWL, PANAS & HAM-D, YMRS
• Further item reduction; lived experience(QoL.BD) Michalak & Murray18
❖ 12 domains + 2 optional domains*; 4-items per domain;
recall: past week
❖ Physical, sleep, mood, cognition, leisure, social,
spirituality, finance, household, self-esteem,
independence, identity + work* & education*
❖ 56 items (~4 mins) & a brief 12 item version (~1 min)
❖ Valid, reliable & responsive to clinical change
❖ Paper-pen; Web-based (QoL.BD Tool); self-monitoring
❖ 14 year old reading levelThe need for an adolescent BD specific-QoL instrument?
❖ CONTEXT
❖ Age, gender & other generational considerations
❖ (Brief) QoL.BD psychometric testing; mean age 41 years (sd 13); ~69% women
❖ Adults perceptions ≠ adolescent perceptions
❖ Gender influence? Differences in QoL among genders?
❖ Applicability of items; esp. finances, household
❖ Language & culture - generalizability?
❖ Item phrasing; adolescent expressions & idioms
❖ Cultural variation; (Brief) QoL.BD recruitment from Canada & USA
❖ Societal norms & expectations - Nordic influence?
❖ Youth embedded with multiple contexts (e.g., peers, family, school,
communities); bidirectional influence (Matza et al.19)
❖ *** Phenomenology of Adolescent QoL & BD implications***
❖ The lived experience of Swedish adolescents with BD?
❖ Acceptability - coerce a top-down measurement?
❖ Needed by who? Clinician or patient?
❖ Dearth of knowledge; recent emphasis - evaluating QoL in response to
pharmacological (Olsen et al.20; Walker et al.21; Rademacher et al.22)
& psychosocial interventions (O’Donnell et al.23; Sharif et al.24)A sneak peak… prelude to tomorrow
❖ Currently, no in-depth
knowledge of the QoL in
Swedish adolescents with BD
❖ Nor is there a psychometrically
tested QoL instrument
❖ Självskattningsformulär för
Livskvalitet Bipolärt syndrom (LkBS)
❖ Ongoing project
❖ Exploring adolescents with BD perceptions
of QoL
❖ Cultural & age adaption of the Brief QoL.BDChallenges will persist…
❖ Plurality of (Hr)-QoL definitions, instruments; no clear
consensus
❖ Imperfect index - latent construct
❖ Capturing & comparing QoL
❖ Domains, subjectivity, prioritization
❖ Perspectives; top-down / bottom-up
❖ BD role - symptoms / functionning / QoL
❖ Instrument validity, reliability, sensitivity
(generalizability | culture-bound)
❖ Numbers needed; (ethical) recruitment
❖ Implementation/clinical integration
Q: Any other
❖ Administration? Barriers? Utility? Cost-benefit? perceived
Outcomes? Sustainability or a fad? Evaluations? challenges?
❖ Interventions to improve QoL???Concluding remarks…
❖ Quality of Life is..
❖ A multidimensional phenomenon
❖ Subjective
❖ Suboptimal in youth with BD
❖ A complement to symptomatology &
functioning; new perspectives on our
practice
❖ Recovery - orientated; power shift;
towards a new normal
❖ A complicated, delicate & uncertain field“Consumers themselves prioritise QoL as an
important, if not the most important, goal of
treatment .”
–Morton et al.2Impressions…
Questions ej clarifications…
cragazan@alumni.ubc.careferences 1. Birmaher B, Axelson D, Goldstein B, Strober M, et al. Four-year longitudinal course of children and adolescents with bipolar spectrum disorders the course and outcome of Bipolar Youth (COBY) study. American Journal of Psychiatry. 2009; 166(7): 795-804 2. Kowatch RA, Youngstrom EA, Danielyan A, Findling RL. Review and meta-analysis of the phenomenology and clinical characteristics of mania in children and adolescents. Bipolar Disorders. 2005; 7(6): 483-496. 3. Rizvi, SH, Ong ML, Youngstrom EA. Bipolar disorder in children and adolescents: an update on diagnosis. Clinical Practice. 2014; 11(6): 665-676. 4. Van Meter AR, Moreira AL, Youngstrom EA. Meta-analysis of epidemiologic studies of paediatric bipolar disorder. Journal of Clinical Psychiatry. 2011; 72 (9): 1250-1256. 5. Gore FM, Bloem PJN, Patton GC, Ferguson J, et al. Global burden of disease in young people aged 10-24 years: a systematic analysis. The Lancet. 2011;377(9783): 2093–2102. 6. Parfit D. Reasons and persons. 1984; Oxford University Press, Oxford. 7. Morton E, Michalak EE, Murray G. What does quality of life refer to in bipolar disorders research? A systematic review of the construct’s definition, usage and measurement. Journal of Affective Disorders. 2017; 212: 128-37. 8. WHO. WHOQOL-BREF: Introduction, administration, scoring and generic version of the assessment. 1996
references cont.
9. Fayed N, de Carmargo OK, Kerr E, et al. Generic patient-reported outcomes in child
health research: a review of conceptual content using World Health Organization
definitions. Developmental Medicine & Child Neurology. 2012: 54, 1085-95.
10. Haverman L, Limperg PF, Young NL, Grootnhuis MA, Klaassen RJ. Paediatric health-
related quality of life: what is it and why should we measure it? Archives of Disease in
Childhood. 2017; 102(5), 393-400.
11. Ferrans CE, Zerwic JJ, Wilbur JE, Larson, JL. Conceptual model of health-related quality
of life. Journal of Nursing Scholarship. 2005; 37(4), 336-42.
12. Jonsson U, Alaie I, Wilteus AL, Zander E, et al. Annual Research Review: quality of life
and childhood mental and behaviour disorders - a critical review of the research
13. Weinstock LM, Miller IW. Functional impairment as a predictor of short-term symptom
course in bipolar I disorders. Bipolar Disorders. 2008; 10(3): 437-42.
14. Parker G, Smith IG, Paterson A, Romano et al. How well does a wellbeing measure
predict psychiatric ‘caseness’ as well as suicide risk and self-harm in adolescents.
Psychiatry Research. 2018; 268, 323-27.
15. Petersen S, Hägglöf B, Stenlund H, Bergström E. Psychometric properties of the
Swedish PedsQL, Pediatric Quality of Life Inventory 4.0 Acta Paediatrica. 2009; 98(9),
1504-122.references cont.
16. Freeman AJ, Youngstrom EA, Michalak E, Siegel R et al. Quality of life in pediatric
bipolar disorder. Pediatrics. 2008; 123(3), e446-452
17. Petersson C, Huus K, Åkesson K, Enskär. Children’s experiences about a structured
assessment of health-related quality of life during a patient encounter. Child: Care,
Health & Development. 2016; 42(3), 423-32.
18. Michalak EE, Murray G, CREST.BD. Development of the QoL.BD: a disorder-specific
scale to assess quality of life in bipolar disorder. Bipolar Disorders. 2010; 12, 727-40.
19. Matza LS, Swensen AR, Flood EM, Secnik K, et al. Assessment of health-related quality
of life in children: a review of conceptual, methodological, and regulatory issues. Value
in Health. 2004; 7(1), 79-92.
20. Olsen BT, Ganocy SJ, Bitter SM, Findling RL, et al. Health-related quality of life as
measured by the child health questionnaire in adolescents with bipolar disorder treated
with olanzapine. Comprehensive Psychiatry. 2012; 53(7), 1000-05.
21. Walker DJ, DelBello MP, Landry, J, D’Souza DN, et al. Quality of life in children with
adolescents with bipolar I depression treated with olanzapine/fluoxetine combination.
Child & Adolescent Psychiatry and Mental Health . 2017; 11 (1), 34e.references cont.
22. Rademacher J, DelBello MP, Adler C, Standford K, et al. Health-related quality of life in
adolescents with bipolar I disorder. Journal of Child & Adolescent Psychopharmacology.
2007; 17(1), 98-103.
23. O’Donnell LA, Axelson DA, Kowatch RA, Schneck CD, et al. Enhancing quality of life
among adolescents with bipolar disorder: a randomized trial of two psychosocial
interventions. Journal of Affective Disorders. 2017; 219, 201-08
24. Sharif F, Mahmoudi A, Shooshtari AA, Vossoughi M. The effect of family-centered
psycho-education on mental health and quality of life of families of adolescents with
bipolar mood disorder: a randomized controlled clinical trial. International Journal of
Community Based Nursing & Midwifery. 2016; 4(3), 229e.
25. Morton E, Michalak E, Hole R, Buzwell S, Murray G. The ‘new normal’: relativity of
quality of life judgements with bipolar disorder - a qualitative study. Quality of Life
Research. 2018; 27(6), 1493-500.You can also read
