ONLINE SUPPLEMENTAL MATERIAL ONLY

Appendix 1. Search algorithms used in each electronic database.

Source: Search terms^ Articles identified

Full text retrieved

Eligible articles*

Medline: MeSH headings: {Adolescent* OR Young Adult* OR teen$.mp OR emerging adult.mp OR AYA.mp OR TYA.mp} AND {Intervention Studies* OR Pilot Projects* OR Program Development* OR Program Evaluation* OR Psychotherapy, Group* OR Social Support* OR Peer Group*} AND {Adaptation, Psychological* OR Anxiety* OR Depression*} AND {Neoplasms/Nursing, Psychology, Rehabilitation, Therapy* OR Diabetes Mellitus, Type 1 OR Juvenile Diabetes OR Cystic Fibrosis OR Asthma OR Juvenile Rheumatoid Arthritis.mp}

366 53 11

PsychInfo: Index headings: {Adolescent* OR Young Adult* OR teen$.mp OR emerging adult.mp OR AYA.mp OR TYA.mp} AND {Intervention* OR Psychotherapy* OR Program Development* OR Program Evaluation*} AND {Emotional States* OR Adjustment* OR “Resilience (Psychological)”* OR Coping Behavior*} AND {Neoplasms* OR Diabetes Mellitus* OR Sickle Cell Disease* OR Cystic Fibrosis* OR Asthma* OR Rheumatoid Arthritis* OR Juvenile Rheumatoid Arthritis* OR Chronic Illness*}

29 3 2

Embase: Index headings: {Adolescent* OR Young Adult* OR teen$.mp OR emerging adult.mp OR AYA.mp OR TYA.mp} AND {Intervention Studies* OR Pilot Projects* OR Program Development* OR Program Evaluation* OR Psychotherapy, Group* OR Social Support* OR Peer Group*} AND {Adaptation, Psychological* OR Anxiety* OR Depression*} AND {Neoplasms/Nursing, Psychology, Rehabilitation, Therapy* OR Diabetes Mellitus, Type 1 OR Juvenile Diabetes OR Cystic Fibrosis OR Asthma OR Juvenile Rheumatoid Arthritis}

529 14 1

CINAHL: Subject headings: {adolescence OR adolescent OR youth OR young adult OR teenager OR teen OR emerging adult OR AYA OR TYA} AND {Adaptation, Psychological* OR Coping* OR Emotions* OR Psychosocial Aspects of Illness* OR Affective Symptoms*} AND {Neoplasms OR Diabetes Mellitus* OR Anemia, Sickle Cell OR Cystic Fibrosis OR Asthma OR Arthritis, Juvenile Rheumatoid OR Chronic Disease OR chronic illness} AND {intervention OR group OR therapy OR support OR program OR pilot study}

299 15 0

Medline in Process & Non-Indexed Citations: Keywords: {adolescen$ OR young adult OR teen$ OR OR emerging 10 2 0

adult OR AYA OR TYA} AND {neoplasms OR cancer OR diabetes mellitus OR sickle cell disease OR cystic fibrosis OR asthma OR juvenile rheumatoid arthritis} AND {adaptation OR coping OR distress OR anxiety OR depression OR adjustment} AND {intervention OR program development OR program evaluation OR pilot project OR feasibility study OR psychotherapy OR support group}

Other sources: Search of reference lists of relevant articles, relevant authors, and table contents of key journals 52 10

Total number of articles eligible for study, excluding duplicates 25

^ Limits: 1979-2010; English; Human/ humans

* After duplicates removed

Appendix 2: Study characteristics and results from emotional and peer support group interventions (significant results in bold)

AUTHOR (YEAR)

SAMPLE (N)

DESIGN INTERVENTION RESULTS (Cohen’s d)

Control Randomized Process Content

Daley (1992)#

Diabetes (N=54)

12-16 years

Yes; no details

Yes Bi-monthly, informal meeting with a lay-person sponsor over 10-months

Personal discussions; diabetes coping; modelling of positive regimen adherence

Child Behavior Checklist-Youth Self-Report form

Diabetes Adjustment Scale * (d=.66-.71, med)

Self-Perception Profile for Adolescents * (d=.42, med)

State Trait Anxiety Inventory (STAI)

Heiney (1988)

Cancer

(N=14)

14-19 years

Usual care

No 6 x 1hr weekly sessions, facilitated by ‘therapists’

Support group, educational components & discussion

Health Locus of Control Scale

Rosenberg Self-Esteem Scale

STAI

Zung Depression Scale

Schwartz et al (1998)

Cancer

(N=76)

18-29 years

Age-matched, healthy controls.

No 3-day ‘weekend’ program (“Moving On”), led by licensed social workers

Psychological responses to the cancer experience; quality of life, self-esteem, problem-solving, interpersonal exercises

Global Quality of Life**

Ryff Happiness Scale*

Short Form Health Survey

Wang et al (2008)#

Diabetes

(N=182)

12-18

Historical control of diabetic non-

No 20-day camp program (“Camp Sweeney”)

Daily medical education lectures and discussions; diabetes regime monitoring

Beck Depression Inventory-2nd Edition

Littlefield Self-Efficacy Scale

Self-report quality of life

Parent-rated quality of life

AUTHOR (YEAR)

SAMPLE (N)

DESIGN INTERVENTION RESULTS (Cohen’s d)

Control Randomized Process Content

years attendees

Personal Adjustment and Role Skills Scale-III* (parent-rated)

The Self Efficacy Scale

* p<.05 ** p<.01 (where only some items were significant, the effect size refers to these only)

# also measured medical and/or treatment adherence outcomes (not listed)

Appendix 3: Study characteristics and results from education/psychoeducational interventions (significant results in bold)

AUTHOR

(YEAR)

SAMPLE (N)

DESIGN INTERVENTION RESULTS (Cohen’s d)

Control Randomized Process Content

Andre et al (2001)

JIA

(n=17) §

13-19 years

Usual care

No 1 x 8hr group seminar

Variety of topics presented by different health professionals

The Medical, Exercise, Pain, and Social Support questionnaire*

Canada et al (2007)

Cancer

(N=21)

15-25 years

Waitlist Yes 2 x 90 minute individual counselling sessions, delivered by a doctoral-level clinical psychologist, plus workbook. 1-month ‘booster’ phonecall

Impact of cancer therapy on sexual development and fertility, peer relations and sexual identity

Brief Symptom Inventory (Global Severity Index)** (d=3.19, very large)

Body Image Instrument

Cancer Rehabilitation Evaluation System** (d=1.72, large)

Sexual Concerns Questionnaire

Sexual Knowledge Test* (d=1.12, large)

De Wit et al (2008)

Diabetes (N=91)

13-17

Usual care

Yes 3 x regular appointments with a pediatrician, spaced over 12-

Discussion of adolescent’s HRQoL, including symptoms, treatment barriers and adherence,

Centre for Epidemiological Studies Depression scale

The Child Health Questionnaire**

Diabetes-specific Family Conflict Scale

AUTHOR

(YEAR)

SAMPLE (N)

DESIGN INTERVENTION RESULTS (Cohen’s d)

Control Randomized Process Content

years months worries, and communication

Patient’s Evaluation of the Quality of Diabetes Care**

Hazzard et al (2002)

Asthma & SCD

(N=38) §

13-18 years

Recreational therapy

Yes Program delivered in separate 3-day educational curricula according to disease and age, supervised by medical staff, in addition to free use

Includes health-education activities as well as components designed to enhance social support and coping

Asthma Knowledge Scale/Sickle Cell Disease Knowledge Scale

Pediatric Coping Checklist (KIDCOPE)** (d=2.9, very large)

Perceived Social Support-Friends subscale

Jones et al (2010)

Cancer

(N=65)

12-18 years

Educational handbook

Yes 7 module, educational CD-ROM, viewed self-guided over 3 months

Cancer-, treatment-related information, and stories from other teen cancer patients

Multidimensional health locus of control scale* (d=.63, med)

Pediatric Oncology Quality of Life Scale

KIDCOPE

Self-Efficacy scale

AUTHOR

(YEAR)

SAMPLE (N)

DESIGN INTERVENTION RESULTS (Cohen’s d)

Control Randomized Process Content

Cancer knowledge questionnaire

Kato et al (2008) #

Cancer

(N=375)

13-29 years

Control video game.

Yes Participants play “ReMission” interactive video game for ≥1 hour/week for 3 months

Participants engage with treatment-related knowledge, self-care behavior and relaxation strategies to advance in the game

Cancer knowledge scale* (d=.15, small)

Functional Assessment of Cancer Therapy-Generic scale

Multidimensional health locus of control scale

Pediatric Quality of Life-Generic Core Scale

Perceived Stress Scale

Self-efficacy scale* (d=.23, small)

Løding et al (2008)

Diabetes

(N=19)

13-17 years

Attention

control

Partially randomized (one group formed on geographical basis)

10 x 1 hour group sessions, delivered monthly; adolescent and parent groups separate

Psychoeducation and problem-solving on diabetes-related topics

Diabetes Quality of Life for Youths

Rodgers Fischl et al (2010)

Diabetes (N=88) 13.2-19.7 years

Usual care

Yes Delivered during 3x diabetes clinic visits, through (i) a two-part CD-ROM, (ii) a book, and (iii) a meeting with a nurse

Preconception counselling program targeting knowledge about diabetes, pregnancy, sexuality, and reproductive health

Knowledge of diabetes and pregnancy (Likert scale)** (d=1.23, very large)

Perceived benefits of seeking/using family planning (Likert)** (d=.73, med)

Intention to initiate discussion with healthcare provider

AUTHOR

(YEAR)

SAMPLE (N)

DESIGN INTERVENTION RESULTS (Cohen’s d)

Control Randomized Process Content

Actual initiation of discussion with healthcare provider

* p<.05 ** p<.01 (where only some items were significant, the effect size refers to these only) # also measured medical and/or treatment adherence outcomes (not listed) § AYAs a subset of the total sample

Appendix 4: Study characteristics and results from skills-based interventions, targeted at AYAs alone (significant results in bold)

AUTHOR (YEAR)

SAMPLE (N)

DESIGN INTERVENTION RESULTS (Cohen’s d)

Control Randomized Process Content

Boardway (1993)

Diabetes (N=19)

12-17 years

Usual care

Yes 13 group sessions, with SMT spaced across 12 weeks

Diabetes SMT included identifying stressful situations, assertive problem solving for family conflict & peer pressure, & cognitive reframing

Diabetes Stress Questionnaire* (d=.91, large)

Life Events Checklist

Self-Efficacy for Diabetes Scale

Ways of Coping Checklist

Channon Diabetes Support Yes Mean of 4 x Motivational Interviewing: Children’s Health Locus of Control Scale

AUTHOR (YEAR)

SAMPLE (N)

DESIGN INTERVENTION RESULTS (Cohen’s d)

Control Randomized Process Content

(2007) # (N=66)

14-17 years

visit individual sessions, 20-60mins each, over 12 months; delivered by psychologists

involved exploring discrepancies between beliefs and behavior, and using problem-solving and goal-setting to build more adaptive behavior

Diabetes Family Behavior Scale

Diabetes Knowledge Scale

Diabetes Quality of Life for Youths** (d=.76-1.31^, med-very large)

Health Care Climate Questionnaire

Personal Models of Diabetes Scale** (d=.86-1.87^, large-very large)

Self-Efficacy for Diabetes Scale

Wellbeing Questionnaire** (d=.48-1.49^, med-very large)

Grey et al. (2000) #

Diabetes (N=77)

12-20 years

Intensive diabetes management alone

Yes 6 x weekly 1.5 hour CST sessions delivered in small groups by psychologists, followed by 12x monthly visits

Training positive coping skills by role-playing problematic social scenarios. This involved cognitive behavior modification, problem-solving, and conflict resolution

Child Depression Inventory** (d=.72, med)

Diabetes Quality of Life for Youths** (d=.63, med)

Issues in Coping with Insulin-Dependent Diabetes Mellitius scale** (d=.44-.50, med)

Self-Efficacy for Diabetes Scale* (d=.44-1.03^, med-large)

Hains (2000)#

Diabetes

(N=14)

Wait-list Yes 6 x 1-hour weekly SMT group sessions, delivered by doctoral level

Targets illness and stress appraisals and positive coping strategies via 3-phase cognitive behavioral, stress

Diabetes Stress Questionnaire

Pediatric coping checklist (KIDCOPE)

AUTHOR (YEAR)

SAMPLE (N)

DESIGN INTERVENTION RESULTS (Cohen’s d)

Control Randomized Process Content

State-Trait Anxiety Inventory

Hampel et al (2003)

Asthma

(n=19)§

14-16 years

Standard patient education

No 10 x 1-hour group SMT sessions, over a 4-week inpatient stay, delivered by staff

Involved cognitive restructuring, self-control techniques, problem-solving, modelling, role play, relapse prevention, & skill practice

German Coping Questionnaire for Children and Adolescents* (d=1.0, large)

Hinds et al (2004)

Cancer

(N=78)

12-21 years

Attention control.

Yes 1 x 40-minute session, delivered verbally by either a nurse or a social worker

Self-care coping education and strategy rehearsal, including peer-modelled coping strategies (presented via a video)

The Hopelessness Scale

Hopefulness Scale for Adolescents

Nowicki-Strickland Locus of Control Scale

Rosenberg Self-Esteem Scale

Symptom Distress Scale

Self-Efficacy Scale

Whittemore et al (2010)

Diabetes (N=12)

13-16 years

Educational website control

Yes 5x weekly online sessions, including peer interaction via ‘discussion boards’

‘TEENCOPE’ website includes sessions on self-talk, communication skills, social problem skills, stress management & conflict

Pediatric Quality of Life Inventory

Perceived Stress Scale

Issues in Coping with Insulin Dependent Diabetes Mellitus-Child Scale

Self-Efficacy for Diabetes Scale

Children’s Depression Inventory

* p<.05 ** p<.01 (where only some items were significant, the effect size refers to these only) # also measured medical and/or treatment adherence outcomes (not listed) § AYAs a subset of the total sample SMT=stress management training

CST=coping skills training

^ Effect sizes are presented as a range to represent significant effects across multiple timepoints.

Appendix 5: Study characteristics and results from skills-based interventions, with parent/family inclusion (significant results in bold)

AUTHOR (YEAR)

SAMPLE (N)

DESIGN INTERVENTION RESULTS (Cohen’s d)

Control Randomized Process Content

Barakat et al (2010)

SCD

(N=53)

12-18

Disease education attentio

Yes Delivered at home across 4 x 90 minute sessions (3 2-weeks apart, plus 1 month final

Cognitive-behavioral techniques (incl. deep breathing/guided relaxation, positive coping statements and guided imagery, targeted primarily at pain and

Health service use

Pain coping

Pain-related hindrance of goals

AUTHOR (YEAR)

SAMPLE (N)

DESIGN INTERVENTION RESULTS (Cohen’s d)

Control Randomized Process Content

years n control booster session); delivered by psychologists

related health/psychological outcomes

Disease knowledge

Disease self-efficacy

Family communication

Kazak et al. (2004)

Cancer

(N=150)

10.8-19.28 years

Wait-list Yes Four-session, 1-day manualized intervention; multifamily group discussion format; delivered by specially trained psychologists, nurses and social workers

Sessions covered: (1) How cancer has affected me and my family; (2) Coping skills; (3) Getting on with life – cancer, adolescents and families; and (4) Pulling it all together – Family Health and our future.

Impact of Events Scale-Revised** (d=.46, med)

Post-Traumatic Stress Disorder Reaction Index

Revised Children’s Manifest Anxiety Scale

Satin Diabetes Wait-list. Yes. 6 x weekly 90- Mutifamily groups discussed Family Environment Scale

AUTHOR (YEAR)

SAMPLE (N)

DESIGN INTERVENTION RESULTS (Cohen’s d)

Control Randomized Process Content

(1989) (N=32)

12-19 years

minute MFDG sessions, delivered by psychologists; with or without added parent diabetes self-care

simulation

diabetes management, attitudes, communication, problem-solving, and cognitive skills to deal with diabetes-related family stress. In Parent Simulation adolescents teach parents diabetes management regime which parents follow for a week

Diabetes attitudes*

Stinson et al (2010)

Juvenile Idiopathic Arthritis (N=46)

Attention

control

Yes 12x weekly 20-30 minute online sessions in addition to regular phone contact with a coach for

Adolescent modules include education about arthritis (symptom management, diagnosis, medications), managing stress & negative thoughts, relaxation, distraction, other types of care,

Juvenile Arthritis Quality of Life Questionnaire

Recalled Pain Inventory* (d=.78, large)

Perceived Severity of Stress Questionnaire

AUTHOR (YEAR)

SAMPLE (N)

DESIGN INTERVENTION RESULTS (Cohen’s d)

Control Randomized Process Content

12-18 years

adolescents; 2 sessions for

parents

lifestyle issues, and ‘looking ahead’ future issues; parents/caregiver sessions help them encourage healthy behavior (the effect of arthritis and helping parents learn to let go)

Medical Issues, Exercise, Pain, and Social Support Questionnaire** (d=1.32, very large)

Children’s Arthritis Self-Efficacy Scale

Wysocki et al. (2001) #

Diabetes (N=119)

12-17 years

Current therapy (CT)

Yes 10 x sessions, of either Behavior-Family Systems Therapy (BFST) vs. Education/ Support group (ES), delivered by psychologists

ES sessions emphasized diabetes education and social support

BFST: guided by family needs & focused on problem-solving and communication skills, cognitive restructuring of diabetes beliefs, and resolution of family issues (e.g., conflict)

Diabetes-Related Conflict Scale*

Parent-Adolescent Relationship Questionnaire*

Teen Adjustment to Diabetes Scale

Wysocki (2006) #

Diabetes

(N=104)

11-16 years

Usual care

Yes 12 x multifamily meetings over 6 months; received either BFST-D or Education & Support (ES), delivered by psychologists

ES: diabetes education and social support

BFST-D: as BFST above with the addition of family-specific problem-solving to reduce treatment barriers, behavioral contracting training, advanced diabetes control education, and parent simulation of diabetes

Diabetes-Related Conflict Scale*

Parent-Adolescent Relationship Questionnaire

* p<.05 ** p<.01 MFDG=multifamily discussion group BFST=behavior family systems therapy; BFST-D= behavior family systems therapy for diabetes # also measured medical and/or treatment adherence outcomes (not listed)