Systematic review of the health-related quality of life issues facing adolescents and young adults with cancer

Our review captured one measure which was specifically designed for both adolescents and young adults with cancer: The Cancer Needs Questionnaire-Young People (CNQ-YP) [64] which includes items relevant to young people aged 14–25 years. In addition, two other measures, one tumour-specific, the Dutch DUX questionnaire for lower extremity bone tumour patients (Bt-DUX) [65] and one generic, the Perceived Illness Experience (PIES) Scale [66], were developed using children as well as AYAs (up to 25 and 24 years respectively). We identified two adolescent measures which are generic in terms of their disease focus: The Adolescent Quality of Life Instrument [67] was piloted with 9–20 year olds and the Hopefulness Scale for Adolescents (HSA) [68]. One measure reviewed was designed for young adults with testicular cancer (aged 18–29 years): The Cancer Assessment for Young Adults—Testicular (CAYA-T) [69]. In addition, there was one measure designed for children and adolescents (8–18 year olds): The Quality of Life in Children and Adolescents with Cancer Scale (PEDQOL) [70]. The studies reviewed also used several generic measures developed for use with age groups covering adolescence, for example the Child Health Questionnaire (CHQ) [71] is relevant for children aged 10–15 years and the Behavioural Assessment System for Children (BASC) [72] is designed to be used with children aged 4–18 years. The DISAKIDS measure (DCGM-37) [73] is used with school aged children including adolescents [74]. The Activities Scale for Kids Performance Version (ASKp) [75] was designed for children aged 10–15 years and has since been used to assess physical function in adolescents with bone tumours aged 10–18.9 years [76] and the Pediatrics Outcomes Data Collection Instrument (PODCI) [77] provides an assessment of functional status in children and adolescents. The Pediatric Functional Assessment of Anorexia and Cachexia Therapy (peds-FAACT) [78] is specific to 7–17 years and includes additional peripheral items for 10–17 year olds. In addition, the PROMIS Pediatric Measures selected for use by Hinds et al. [79] were suitable for completion by 8–17 year olds.

The majority of questionnaires captured in this review represent adaptations of paediatric or adult measures and thus include different age versions. The PedsQL [62] was the most common measurement scale of choice amongst the studies reviewed and used in 27 of the 69 studies The PedsQL measurement model captures both generic (core measure) and disease-specific aspects of measurement with the core instrument supplemented by disease-specific (e.g. cancer), tumour-specific (e.g. brain) or symptom-specific (e.g. fatigue) modules. In terms of age versions, the PedsQL offers an adolescent form for 13–18 years and was adapted by Ewing et al. [80] to create an AYA form appropriate for 16–24 years. The Pediatric Cancer Quality of Life Inventory (PCQL-32) [81] and the Quality of Life for Children with Cancer (QOLCC) [82] also have adolescent versions for 13–18 year olds. The Pediatric Advanced Care Quality of Life Scale (PAC-QoL) [83] has an adolescent version for 13–19 year olds. The KINDL measure of quality of life in chronically ill children has an oncology-specific as well as adolescent version (KINDL Kiddo) for children 13–16 years [84]. The Child Health and Illness Profile also has an adolescent edition (CHIP-AE) for 11–17 year olds [85]. There are also several measures developed with adults that have been adapted for use with younger respondents. The Health-related Hindrance Inventory (HRHI) [86] was adapted for use with adolescents and the Reproductive Concerns Instrument [87] was adapted for use with 12–18 year old females with cancer [38]. The Memorial Symptom Assessment Scale (MSAS 10–18) was also adapted for children and adolescents (aged 10–18 years) [88]. The Minneapolis–Manchester Quality of Life (MMQL) Questionnaire has an adolescent form (13–20 years) [89] and the Behavioural Affective and Somatic Experiences Scale has a child-form (BASES-C) [90] covering AYAs (up to 20 years). Finally, the 16-Dimensional Health-related Measure (16D) [91] represents an adaptation of the adult 15D measure and is suitable for 12–15 years.

AYAs talked about their symptoms such as fatigue, loss of strength, pain, cognitive difficulties, hair loss, impaired appetite and desire to eat [28, 32, 34, 39, 42, 49, 50, 59, 61]. Symptoms were recognised as a major theme in Moody et al.’s exploratory study [61] and as a HRQoL domain by Hinds et al. [59]. Physical functioning of AYAs with cancer including health status, mobility and symptoms (disease- and treatment-related) such as pain, fatigue, nausea, discomfort, difficulty sleeping, mobility, anorexia and cachexia, is assessed by a number of PROMs (PedsQL instruments, CHQ, CHIP-AE, Bt-DUX, Adolescent Quality of Life Instrument, CAYA-T, DCGM-37, ASKp, PODCI, PROMIS measures, PCQL-32, QOLCC, PACQOL, BASES-C, MMQI, HRHI, KIDDO and 16-D). The PedsQL also includes a fatigue-specific module. Five studies recorded symptom prevalence and impact using symptom distress or checklist measures [27, 36, 92, 93].

Difficulties thinking and concentrating were described by adolescents in Chiang et al.’s study [49] as impacting on their school attendance. Cognitive functioning in terms of attentiveness, memory and cognitive fatigue also forms part of the CAYA-T, PedsQL (within the school functioning subscale and the PedsQL Fatigue measure).

Symptoms such as fatigue, lack of strength and motivation as well as time spent undergoing medical treatment compromised participants’ ability to engage in everyday activities, partake in sports, attend school and interact with others [25, 34, 39, 49, 50, 59, 60]. When discussing the impact of illness and treatment, adolescents often made reference to milestones their peers had reached such as selecting colleges and learning to drive [60]. Parents’ over-protectiveness was also perceived by adolescents as a barrier to engaging in everyday activities [49]. For adolescents in Chiang et al.’s study [49], this lack of participation in activities was expressed as impairing their self-performance and compromising the realisation of talents which also impacted on future life plans. Participants of Moody et al.’s [61] study described feeling trapped and bored by their lack of freedom and loss of a normal life. Poor attendance at school resulted in adolescents falling behind their peers [49, 61]. However, for participants of Momani et al.’s study [50], missing school was described as a positive effect of being ill.

PROMs also evaluate the impact of physical health status and cognitive functioning on the ability to carry out daily activities, most notably self-care, work, education and hobbies. (CNQ-YP, PIES, Adolescent Quality of Life Instrument, CAYA-T, CHQ, PedsQL, 16-D). The PedsQL core measure assesses aspects of school functioning with the AYA form adapted to read study/work. In addition, the CHIP-AE provides an assessment of achievement (academic and work).

Restricted social interactions were a recurring theme leaving AYAs feeling disconnected and isolated from their peers [25, 34, 50, 59, 61]. There were reports of friends “keeping their distance” [34] as well as an insight into “true friends” [34, 61]. In addition to losing friendships, there were accounts of opportunities to establish new friends amongst fellow patients [50]. Participants also described greater value placed on relationships with others with friendships taking on a new meaning and family ties strengthened and these were seen as an important source of comfort [25, 34, 50].

Increased dependency on others came at a time when adolescents had recently gained independence and resulted in feelings of loss of control [25]. AYAs in Enskär’s et al.’s study [34] also talked about strained relationships with family members.

Opportunities for romantic relationships were also described as limited and took on a lower priority due to symptoms of fatigue and nausea as well as lowered self-esteem and prolonged hospital stays [42]. In addition, anxiety surrounding fertility was also reported [41] and led to concerns about prospects for future relationships. Stinson et al. [42] also explored the impact of cancer on adolescents’ sexual relationships and discovered that, in contrast to the assumptions held by parents, AYAs perceived little impact.

Social functioning is covered by most of the measures used in the studies reviewed (CNQ-YP, Bt-DUX, CAYA-T, PCQL-32, QOLCC, PedsQL, PIES, CHQ, DCGM, Adolescent Quality of Life Instrument, PROMIS Measures, PAC-QoL, KINDL/KIDDO, BASES-C, MMQL and 16-D). The PEDQOL and KINDL Kiddo distinguishes between relationships with family and friends. Social exclusion including peer rejection and bullying is assessed by the DCGM, PedsQL and PIES. In addition to measuring the impact on family relationships and interactions, some measures examine the perceived impact on family members, for example, emotional/time pressures on parents, limited family activities and family cohesion are assessed by the CHQ while parental behaviour represents a domain of the PIES. Emotional reactions of others also formed part of Enskär et al.’s problem list [34] and concern over the feelings of family members was voiced in Moody et al.’s study [61]. Dyson et al. [21] used The Supportive Care Needs Survey (SCNS) [94] to assess AYAs’ concerns about worries of those close to them.

Intimate relationships are a domain of the MMQL and sexual functioning is assessed as part of the CAYA-T and formed part of the supportive needs assessment used by Dyson et al. [21]. Roper et al. [27] used the Impact of Cancer scale [95] to assess intimate relationships in young adults.

Concerns over fertility are the focus of one of the measures reviewed (Reproductive Concerns Instrument, used by Quinn et al. [38]) and forms part of the Health Utilities Index [96] used by Yaris et al. [97]. Trevino et al. [30] discussed loss of fertility in the context of causing significant unique cancer-related grief amongst young adults.

Interviews with AYAs provided accounts of their emotional reactions to being ill. Mood was identified as a HRQoL domain by Hinds [59] and emotional reactions were a major theme reported by Moody et al. [61]. Participants described a greater tendency to become upset [50], as well as feelings of vulnerability [25], frustration [49], anger [61], and fear over mortality [61]. The impact of cancer on self-confidence [34] and self-esteem was also reported [34, 42] although improvements to self-appraisals were also described such as becoming a better, more positive and less selfish person [34, 50] as well as feelings of greater maturity [34].

Feelings are evaluated alongside relationships in the (CNQ-YP). Assessments of emotional or psychological functioning amongst AYAs with cancer include mood (Adolescent Quality of Life Questionnaire, BASES-C), anxiety (BASC, PROMIS, PedsQL), depression (BASC, PROMIS), sadness (PedsQL) preoccupation with cancer (PIES), concerns for the future (PedsQL, SCNS), fear of the unknown (PedsQL), lack of motivation, anger (PROMIS, PedsQL), irritability, vulnerability, hopefulness (HSA), confidence and self-esteem/self-worth (CHQ, PODCI).

Emotions relating to appearance issues such as hair loss formed part of the problem list discussed by AYAs in Enskär et al.’s study [34] and was the focus of Snöbohm et al.’s study [28]. Adolescents in Stinson et al.’s study described feeling less attractive and desirable to others which in turn impacted on their self-esteem and confidence in engaging in romantic relationships [42]. Physical appearance or perceived body image is evaluated as part of the PIES, PEDQOL, Bt-DUX, MMQL, 16-D and PedsQL Cancer module which includes the item “I don’t look like myself”.

The impact of illness on spirituality was explored amongst children and adolescents of Kamper et al.’s study [60] and altered, often positive, perspectives on life were described by adolescents [50] and young adults [25]. The Adolescent Quality of Life Instrument evaluates the meaning of being ill. Spirituality is covered by the CAYA-T and is the focus of the Spiritual Quality of Life Questionnaire used in Kamper et al.’s interviews [60]. Personal growth amongst young adults with cancer was evaluated by Monteiro et al. [26] by using the Personal growth subscale of the Psychological Well-Being Scale [98]. The MMQL assessment also provides an insight into outlook on life.

Zareifar et al. [55] used the EORTC QLQ C30 [63] to provide an evaluation of financial difficulties. Roper et al. [27] also measured the use of supportive care services and discovered that financial concerns were identified as a major reason for accessing such services.