A systematic review of effectiveness of patient therapeutic education in children diagnosed with cancer and their family on health outcomes including health-related quality of life measures and health care utilisation

Review question/objective

The overall objective of this systematic review is to determine the best available evidence related to the use of patient therapeutic education (PTE) in which at least one nurse has been involved in the intervention, in childhood cancer. More specifically, the objectives are to determine: the effectiveness of patient therapeutic education on, but not limited to, health outcomes, health-related quality of life measures, health care utilization, symptom management, adverse effects, adherence, biological markers, family functioning in children diagnosed with cancer and their family.

Background

Cancer is a leading cause of death in westernised countries ⁽¹⁾. The financial burden of the disease is considerable and has an impact on the whole healthcare system ⁽²⁾. While adult cancers represent a major part of all types of cancer in the community, the incidence of childhood cancer is high. In Switzerland the incidence rate is 13.5 per 100'000 children ⁽³⁾ which is comparable to European rate (13.85 per 100'000), and that in North America (14.0 -16.0 per 100'000)⁽⁴⁾. In Switzerland, there are approximately 220 new cases per year; the incidence rate in children aged less than 5 years is nearly twice as high as in the 5 to 14 years age group (19.3 and 10.8 per 100'000, respectively)⁽⁵⁾. Despite recent advances in cancer treatment, mortality of children with cancer remains high (23%) (5). Currently, approximately 70% of childhood cancers can be cured with new innovative therapies. Nevertheless some types of cancers remain a difficult challenge, and for those who survive, the burden of treatment is substantial not only for the child but also the family ⁽⁶⁾.

Treatment for children with cancer may include chemotherapy, radiation, and/or surgery ⁽⁷⁾. In addition to the effects of the disease itself, children with cancer who undergo treatment may experience considerable psychosocial and physiological complications. The treatment and evolution of the disease may result in frequent hospital visits or stays, impacting school attendance, quality of life, and family functioning. During the recovery phase, regular checks are needed to detect any recurrence; all these aspects highly influence the quality of life of the child and their family ⁽⁸⁾.

A recent primary research study showed that adults who survived cancer during their childhood are at higher risk of developing long-term psychological complications, such as distress, interpersonal sensitivity, depression, aggression and psychotic disorders ⁽⁹⁾. Patient therapeutic education (PTE) is “a basic, lasting component of patient management”. Its aim is to improve the patient's quality of life; this is achieved through developing knowledge and management skills, including disease progression and treatment (10). PTE does not include the provision of oral or written information and advice about prevention, only ⁽¹¹⁾. To ensure psychosocial patient-centred care, PTE involves dialogue amongst a multi-disciplinary team, with nurses playing a central part in co-ordinating role functions ⁽¹²⁾.

In the oncology setting, “the contribution of therapeutic education may enable the patients to have adequate information on illness, actively participate in disease management, understand how to live with the illness, learn how to face critical moments of the clinical course, and live in harmony with all health professionals” ^{(8, p.9)}. A Cochrane review ⁽¹³⁾ reported on the effects of interventions for improving communication with children and adolescents on their knowledge and understanding of their cancer and its treatment; psychological, social, and behavioural outcomes; and physical health outcomes. There is some overlap between interventions focusing on communication improvement and PTE. Moreover, Ranmal's review focused mainly on children and adolescent outcomes ⁽¹³⁾. Childhood cancer involves all age groups with a higher incidence rate in the less than 10 years of age group ⁽³⁾. Families have to learn to adjust to their child's needs and in some instance the siblings' needs. They also need to mobilise resources to maintain their own health, positive mental images, and manage uncertainty, anxiety, and distress ^{(14, 15)}. In child cancer, the parent is the principal caregiver and a unique source of comfort for the child. In that regard, it seems important to target parents as well as the child in PTE to optimise the results. To our best knowledge, there is no systematic review that focuses on this aspect.

Inclusion criteria

Types of participants

This review will consider studies that include children diagnosed with cancer aged 0 to 18 years and their families, parents (or guardian) and siblings. Exclusion criteria: Children and youth in remission; known pre-existing psychiatric disorders in children with cancer and/or their parent.

Types of intervention(s)/phenomena of interest

The review will include interventions that include one or more of the following dimension: 1.Cognitive (sensibilisation, information, learning self-care techniques, and related to the disease, treatment, care, and the overall organisational structure of the health care services involved) 2.Perceptive (e.g. symptoms management) 3.Infra-(implicit reasoning e.g. recognition of mild and severe side effects) 4.Meta-(learning abilities and auto-evaluation) and 5.Emotional/affective (e.g. psychological support)⁽¹⁶⁾. Studies meeting Lagger's ⁽¹⁷⁾ quality indicators such as a) brief information on the type, length, frequency, setting, and substance of the educative interventions and b) detailed description, allowing the reproduction of the educative interventions, will be included in this review. Family members, parents (or guardian) of children diagnosed with cancer and their children are the recipient of the PTE (as family-centred care is standard practice in paediatrics.

This systematic review will focus on intervention provided by, but not limited to, at least one nurse in the education programme intervention. PTE is a fundamental standard of nursing practice” ⁽¹⁸⁾ and integral part of their role ⁽¹⁹⁾. PTE in paediatrics involves including both patient and relatives ⁽⁸⁾. Nurses provide health teaching via methods appropriate to children's developmental level, learning needs, readiness, ability to learn, language preference, culture, and situation. This also applies to their parent. Through TPE, nurses “can improve patient's physical and mental health, improve their quality of life, decrease personal and environmental risk factors, and prevent disease, illness and disability ” ANA, Scope and Standards of Practice, 2004 cited in New York State Association ⁽¹⁸⁾.

Studies that do not include at least one nurse involved in the education programme intervention will be excluded as this review focuses on nursing interventions.

Types of outcomes

This review will consider studies that include the following quantitative outcome measures, but not limited to:

Children's outcomes (self-reported or proxy measures depending on the child's developmental age): domains of health-related quality of life that include

• Self-efficacy (instruments as defined by Bandura ⁽²⁰⁾)
• physical function (standardised instrument)
• pain (self-reported or assessed using observational pain measures, depending on age)
• coping with disease (standardised instrument)
• psychosocial adjustment (standardised instrument)
• social functioning (standardised instrument)
• impact of the disease in general (self-reported or proxy measures using Visual Analogue Scale)
• symptom management/adverse effects (number of symptoms/adverse effects)
• adherence (compliance to advice or treatment)
• health care utilization (e.g. number of hospital visits)
• biological markers (e.g. infection)
• Quality of life (standardised scale).

Family (or guardians) outcomes:

• family functioning
• self-efficacy
• coping with disease of their child
• Quality of life

Self-efficacy is defined by Bandura ^{(21, p.71)} “as people beliefs about their capabilities to produce designated levels of performance that exercise influence over events that affected their lives. Self-efficacy beliefs determine how people feel, think, motivate themselves and behave. Such beliefs produce these diverse effects through four major processes. They include cognitive, motivational, affective and selection processes”. This key concept is particularly relevant in nursing and patient therapeutic education ⁽²²⁾. However, as self-efficacy is task-specific, there is no uniform standardised instrument.

Health-related quality of life outcomes (physical functioning, pain, impact of the disease, social functioning) are measured with self-administered disease-specific standardized instrument such as the Child Health Assessment Questionnaire (CHAQ) ⁽²³⁾. The CHAQ is a standard questionnaire including 30 questions grouped into 8 domains of daily living, including dressing and grooming, arising, earring, walking, hygiene, reach, grip, and activities. Each domain is then averaged to calculate the CHAQ disability index ranging from 0 (best) to 3 (worst). The CHAQ also includes self-reported or proxy assessment of the impact of the disease.

Types of studies

The review will consider any randomised controlled trials (RCT and quasi-RCT); in the absence of RCTs other research designs, such as non-randomised controlled trials and before and after studies, will be considered for inclusion to enable the identification of current best evidence regarding patient therapeutic education for children with cancer.

Search strategy

The search strategy aims to find both published and unpublished studies, in English, French from 1980 to 2010.

A three-step search strategy will be utilised in this review. An initial limited search of MEDLINE and CINAHL will be undertaken followed by analysis of the text words contained in the title and abstract, and of the index terms used to describe article.

A second search using all identified keywords and index terms will then be undertaken across all included databases.

Thirdly, the reference list of all identified reports and articles will be searched for additional studies.

The databases to be searched include: Australian Clinical Trial Registry (ACTR), Bandolier, Best BETS, BioMed Central, Campbell Collaboration Library, CDR Databases (including DARE, EEH, HTA) Cinahl, Cochrane Library, Embase Health Source: nursing/academic edition, Medline Pubmed National Library of Medicine (NLM) gateway, PsiTri, Psychinfo, TRIP, and Mednar.

Database Individual search strategies will be developed for each database to take into account any differences in thesaurus terminology and indexing.

The search for unpublished studies will include: Mednar, Proquest, Dissertation abstracts Conference proceedings Research and clinical trials register: Clinical Trials, Current Controlled Trials.

Hand searching of relevant journals (e.g. European Journal of Oncology Nursing, Patient Education and Counseling, etc.) and conference proceedings will be performed to reveal additional grey literature and unpublished studies.

Full text articles of studies retrieved in the search will be assessed for relevance against the inclusion and exclusion criteria. Two reviewers will conduct this assessment independently using the JBI web-based assessment tools. Any disagreements that arise between the two reviewers will be resolved through discussion with a third designated reviewer.

Bibliographic details of the studies will be downloaded or manually entered into Endnote database (Endnote X4).

The search will be limited to the English, but we will consider identified studies in French language.

Initial keywords and MeSH terms to be used for the review are presented in Appendix I.

Assessment of methodological quality

Quantitative papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using standardised critical appraisal instruments from the Joanna Briggs Institute. Meta Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI). The JBI critical appraisal checklist will be used for the experimental and quasi experimental studies retrieved (see Appendix II). Any disagreements that arise between the reviewers will be resolved through discussion, or with a third designated reviewer.

Data collection

Quantitative data will be extracted from papers included in the review using the standardised data extraction tool from JBI-MAStARI (Appendix III). Two reviewers will extract the data independently using the JBI web-based assessment tools. Any disagreement that arises between the two reviewers will be resolved through discussion with a third designated reviewer. Where necessary, the principal investigator of a study will be contacted (when possible) to obtain any missing information. The data extracted will include specific details about the interventions, populations, study methods and outcomes of significance to the review question and specific objectives.

Data synthesis

Quantitative papers will, where possible be pooled in statistical meta-analysis using the Joanna Briggs Institute Meta Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI). All results will be subject to double data entry. Odds ratio (for categorical data) and weighted mean differences (for continuous data) and their 95% confidence intervals will be calculated for analysis. Heterogeneity will be assessed using the standard Chi-square. Where statistical pooling is not possible the findings will be presented in narrative form.

Review Panel composition:

The systematic review panel will be composed of a group of researchers from various background who attended the JBI training course (module 1, 3 and 4), clinicians' experts in paediatrics representing a tertiary referral hospital in western Switzerland. This review will be coordinated by a senior nurse researcher who has been previously involved in a JBI systematic review (Impact of the physical environment in paediatric hospitals on health outcomes).

Conflicts of interest

There is no conflict of interest regarding this systematic review.