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Head and neck cancer peer-to-peer support and quality of life: systematic scoping review

10 March 2022
14 min read
Volume 31 · Issue 5

Abstract

Background/aim:

The aim of this scoping review was to summarise the current evidence for peer-to-peer support and its impact on quality of life (QoL) in head and neck cancer (HNC).

Methods:

Five search engines were used—PubMed, CINAHL, APA PyscInfo, Web of Science and HaNDLE-on-QoL—to look for publications between 1981 and 2020. Adapted PICO (population, intervention, comparator and outcome) and Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) methodology was used.

Results:

Of the 1408 papers identified, 10 met the inclusion criteria: five qualitative, two cross-sectional, one case-control, one cohort and one quasi-experimental design. There were four common themes: patient experience of peer-to-peer support, delivery of peer-to-peer support, engagement with peer-to-peer support and impact on QoL.

Conclusion:

This review highlights the paucity of evidence with regard to QoL and peer-to-peer support in HNC. It provides a summary of the literature and identifies considerations for clinical practice and future research.

Head and neck cancer (HNC) and its treatment is associated with life-changing challenges, with many patients experiencing substantial detrimental changes to appearance, eating, speech, and swallowing function (Fang and Heckman, 2016). These impact on physical, emotional and social wellbeing. Such challenges can reduce a patient's willingness to interact socially and can be associated with increased anxiety and depression (Korsten et al, 2019), which can be associated with reduced quality of life (QoL) (Hammermüller et al, 2021). The prevalence of depression in HNC patients is higher than in other cancers, ranging from 22% to 57% (Archer et al, 2008). Patients with HNC have unmet supportive care needs, which need to be recognised and treatment individualised to take them into account (van Sluis et al, 2020). QoL and these unmet needs may be improved through social support (Dahill et al, 2020). One way of achieving this is through peer-to-peer support, although this has received little attention in the literature (Walshaw et al, 2020).

Peer-to-peer support is when individuals who have experienced a similar event provide social, emotional, or practical support for each other to help them to better cope with their situation (Park et al, 2019). Peer-to-peer support can be delivered in a range of formats, including face-to-face or online support groups, one-to-one peer support and professionally-led peer support groups (Hoey et al, 2008). Peer-to-peer support can be beneficial, improving knowledge and awareness and providing reassurance, which may help an individual prepare for the future and reduce feelings of isolation (Baker, 2020). However, there are some problems associated with peer-to-peer support including the sharing of incorrect information, the feeling of being let down by a peer and the ethical consideration of confidentiality when confiding in a fellow peer (Baker, 2020). Much research focuses on peer-to-peer support and QoL in breast cancer and has demonstrated a clear benefit (Ashbury et al, 1998; Tehrani et al, 2011; Taleghani et al, 2012). Although peer-to-peer support is recognised as an important component in cancer care, there seems to be relatively little evidence specific to QoL and HNC. The aim of this scoping review was to identify, collate and summarise the existing literature on peer-to-peer support and its impact on QoL in HNC patients, with considerations for clinical practice and future research.

Methods

This review follows the methodology proposed by Levac et al. (2010) and further developed by the Joanna Briggs Institute (JBI) (Peters, 2020). A scoping review was chosen over a systematic review as the aim was to assess the selected literature, summarise the findings and identify knowledge gaps. The quality of the papers was assessed by the JBI criteria checklist (Lockwood et al, 2015; Moola et al, 2020; Tufanaru et al, 2020). The main research question was identified using the PICO (population, intervention, comparator and outcome) format (Aslam and Emmanuel, 2010). The main research question was: ‘What evidence is there for peer-to-peer support in patients with HNC and QoL?’.

Search strategy

Five search engines were used: PubMed, CINAHL, APA PyscInfo, Web of Science and HaNDLE-on-QoL (http://www.handle-on-qol.com). The search terms were ‘head and neck neoplasms’ OR ‘mouth cancer’ OR ‘laryngeal cancer’ OR ‘oral cancer’ OR ‘oropharyngeal cancer’ OR ‘head cancer’ OR ‘neck cancer’ AND ‘social support’ OR ‘self-help group’ OR ‘peer support’ AND ‘quality of life’ OR ‘health-related quality of life’.

Selection criteria

Papers published from January 1981 to October 2020 were retrieved. Papers were included if they related to HNC patients and full text was available in English, including full paper publications and reviews, randomised controlled trials, cohort studies, case-control studies and qualitative studies. The nature of peer-to-peer support included one-to-one peer-to-peer support, support group or self-help group and online or web-based support group. Papers were excluded if only published as a commentary, or an abstract conference presentation, or if the nature of support was that it was provided by a health professional (eg, nurse-led intervention).

The selection process was guided and constructed according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) checklist (Tricco et al, 2018). Rayyan (Rayyan Systems Inc) was used as a data-management tool to store titles, abstracts and delete duplicate papers found during the database search (Ouzzani et al, 2016). All authors met throughout the process to agree the search terms, inclusion and exclusion criteria. Papers were collated by the first author (RH). All identified papers were subject to an initial title and abstract review to decide if they met the inclusion criteria, 10% were checked by JP for agreement. The full papers were then screened with 20% being assessed at random by the research team, as a reliability check for the final selection, discussing any papers where there was uncertainty regarding eligibility. The final papers were then hand and citation searched for any papers that may fit the topic of the review.

The results are reported using the PRISMA four-phase flow diagram (Moher et al, 2009). All authors reviewed the full text of the selected papers and agreed on the data extracted from the selected papers. Key data comprised authors, year of publication, country of publication, aim of paper, study design, cohort of patients, number of patients, category of peer support, study methods and main findings (Table 1). All papers were quality assessed using the JBI checklists according to study design (Lockwood et al, 2015; Moola et al, 2020; Tufanaru et al, 2020). As all types of study were included in the search, a narrative synthesis was planned to extract and combine all relevant findings. This involved analysing the data for key themes and concepts. Following this, four common themes were developed and agreed by all authors with the data and links between papers explored.


Table 1. Data extraction
Authors, year, country Aim Study design Cohort of patients (n) Category of peer support Methods Main findings
Egestad (2013), Norway Explore peer support during radiotherapy Qualitative HNC patients during radiotherapy treatment (11) One-to-one support and group support In-depth interviews Participants thought it was important to meet fellow peers as it can reduce uncertainty, loneliness and allow the sharing of information
van Sluis et al (2020), Netherlands Explore recovery needs Qualitative Women with laryngectomies (8) One-to-one support and support groups Semi-structured interviews Women-specific challenges included altered appearance, altered voice and not being able to perform care activities. It was also found that meeting a laryngectomised individual prior to surgery had mixed responses
Dooks et al (2012), Canada Identify what support is available after laryngectomy following hospital discharge Qualitative Patients with laryngectomies (9) Web-based support groups In-depth interviews Many types of support including peer support are crucial for a positive transition. One of these may be web-based support groups, which may help improve communication
Algtewi et al (2015), UK Identify support provided by online HNC groups Qualitative Mixed cohort of HNC patients (203) Online support group Content analysis of online messages Online support groups are used by individuals with HNC to seek many different types of support, the most common being informational and emotional
Kristensen et al (2019), Netherlands Explore outcomes of a residential rehabilitation programme Qualitative HNC patients (40) Support group and one-to-one support Semi-structured focus group interviews The programme was beneficial as it allowed peers to meet and share information and encouragement in a positive environment. This helped participants gain better coping mechanisms
Carroll-Alfano (2019), USA Explore education, counselling, support groups for laryngectomy patients Cross-sectional Patients with laryngectomies (236) Support groups (online and in-person) Anonymous survey Only 40.5% and 49% of participants felt they received adequate education before and after surgery respectively.71.0% of participants reported participating in any type of support group
Relic et al (2001), Germany Investigate QoL outcomes of HNC self-help group Cross-sectional Patients with laryngectomies (29) Support group HRQoL questionnaires (EORTC QLQ-C30 and EORTC H&N35) with open questions Coming to terms with a laryngectomy is largely a social phenomenon. Patients derive support from family and self-help groups
Mowry and Wang (2011), USA Compare QoL between HNC patients attending support groups to those who do not Case-control HNC patients (37) Support group Medical Outcomes Study Short Form-36 Item Health Survey version 2 and a non-validated supplementary questionnaire No statistical significance between the support group and non-support group identified for any QoL domain (role physical, physical function, social function, role emotion and general health); however, it was a small sample size
Oskam et al (2013), Netherlands Looked at QoL and the perceived need and use of healthcare services Cohort Advanced oral or oropharyngeal cancer patients treated with surgery and adjuvant radiotherapy (80) One-on-one support HRQoL questionnaires (EORTC QLQ-C30 and EORTC H&N35) and a non-validated supplementary questionnaire The deterioration in HRQoL at baseline versus long term was statistically significant in 8 of the 28 domains presentedUptake of peer support during treatment was 20% versus 35% at long-term follow-up
Vakharia et al (2007), USA Compare QoL of HNC patients who do and do not participate in a support group Non-randomised Quasi-experimental HNC patients (37) Support group Validated University of Michigan Head and Neck QoL instrument Those who attended the support group had higher scores in three head and neck QoL domains (P<0.01). Speech was the only domain where the difference between the support group and non-support group was not statistically significant (70% versus 57%)

HNC=head and neck cancer; HRQoL=health-related quality of life; QoL=quality of life

Results

The initial database search retrieved 1406 papers and hand-searching retrieved two. Reference management software identified 385 duplicates, leaving 1023 papers. Titles and abstracts screened out 911 papers (Figure 1). There was disagreement between reviewers on just three papers, all were accepted into the next stage of review. The remaining 112 papers were then full-text screened. Overall a total of 10 papers were taken for full review.

Figure 1. PRISMA flow chart of database search based on inclusion criteria for scoping review

Study characteristics

The studies varied in design and included five qualitative, two cross-sectional, one case-control, one cohort and one quasi-experimental design. Four papers focused on individuals with laryngectomies. Papers were all published between 2001 and 2019 in six different countries: Norway, the Netherlands, Canada, UK, USA and Germany. Table 1 describes the characteristics and findings of the included papers.

Study quality

All papers were screened for quality against the appropriate JBI criteria checklist. All qualitative studies were of high quality, but none fulfilled two of the criteria: providing a statement about the authors' influence on the study, and the potential for the researcher to have influenced the study and vice-versa. A common weakness in the quantitative papers was their use of unvalidated measures, negating the potential for data synthesis (Relic et al, 2001; Mowry and Wang, 2011; Oskam et al, 2013; Carroll-Alfano, 2019).

Data synthesis

Four common themes were identified across the papers: patient experience of peer-to-peer support, delivery of peer-to-peer support, engagement with peer-to-peer support and impact on QoL.

Patient experience of peer-to-peer support

Patient experience of peer-to-peer support varied, and papers included advantages and disadvantages. All papers agreed that peer-to-peer support could be beneficial. The main benefit noted was sharing information, gaining an insight into the future, and connecting with others, helping to reduce the feeling of uncertainty and isolation. In an open question, 75% of patients in one study reported family support as the most important way of helping them cope, whereas a third identified self-help groups (Relic et al, 2001). Patients reported that a residential programme provided a safe and supportive environment to practise new skills while benefiting from interacting with peers who exchanged information and provided encouragement (Kristensen et al, 2019). Those who engaged in peer support as mentors reported feeling important and valuable as they were able to provide information and help a fellow patient (Egestad, 2013).

Disadvantages of peer-to-peer support were explored in three qualitative studies (Egestad, 2013; Kristensen et al, 2019; van Sluis et al, 2020). Some felt meeting a peer did not fully prepare them for life after surgery, with some peers neglecting to share long-term difficulties (van Sluis et al, 2020). Others feared meeting patients with more advanced cancer as this could be their future (Kristensen et al, 2019); meeting a peer had the potential to increase emotional distress (Egestad, 2013).

Delivery of peer-to-peer support

All papers gave details on how the peer-to-peer support intervention was delivered. The most common form was in-person support groups, with seven papers reporting other modes including online support groups or one-to-one peer support. Carroll-Alfano (2019) found patients who were female (80.3% of females vs 66.4% of males), and those living in urban areas (58.7% urban vs 24.5% rural) were more likely to attend in-person support groups—Mowry and Wang (2011) also found a higher proportion of female attendees. People living in rural areas were more likely to participate in online support groups than those living in urban areas (59.2% vs 47.8%) (Carroll-Alfano, 2019).

Mechanisms for access varied, with patients independently finding online support groups to communicate with each other (Dooks et al, 2012). People with a laryngectomy accessed both in-person and online support groups in similar proportions (52% vs 46%) (Carroll-Alfano, 2019). Patients used these forums to access information (43% of online messages), obtain emotional support and to improve their confidence (Algtewi et al, 2015).

Engagement with peer-to-peer support

Timing of peer-to-peer support introduction and the nature of the relationship affected participation and engagement. All papers reported on post-treatment peer support, except one, which introduced support while patients were undergoing radiotherapy (Egestad, 2013). Two papers looked at factors affecting access with both finding attendance decreased with time since treatment (Oskam et al, 2013; Carroll-Alfano, 2019). Carroll-Alfano (2019) reported high uptake in the first year following treatment (78% at 0-3 years) dropping to 63% beyond 10 years.

Two papers explored issues relating to lack of engagement (Kristensen et al, 2019; van Sluis et al, 2020). For some this was due to physical symptoms such as fatigue, or fear of meeting someone else with more advanced HNC as they were afraid this would be their future (Kristensen et al, 2019). Having a peer with whom the patient could identify with regard to age and family circumstances was important (van Sluis et al, 2020).

A questionnaire looking at the need and use of peer support found 35% of patients expressed a need but only 20% accessed peer support, however this was taken from a small sample size (n=26) (Oskam et al, 2013).

Some patients may be limited as to what peer support they can access. With some patients not being familiar with computers or technology, online support is harder to access. However, one participant spoke of how proud they felt after learning to use a computer and being able to contact friends and family as a result (Dooks et al, 2012).

Impact of peer-to-peer support on QoL

Two papers reported on QoL outcomes and peer-to-peer support groups using different questionnaires—the University of Michigan Head and Neck Quality of Life instrument and the Medical Outcomes Study Short Form-36 Item Health Survey version 2—and found conflicting results (Vakharia et al, 2007; Mowry and Wang, 2011). Mowry and Wang (2011) looked at eight domains related to global QoL and reported no significant improvement in QoL for those attending a support group. In contrast, Vakharia et al (2007) found that patients who attended support groups had significantly higher scores in three domains of head and neck QoL: eating, emotion, and pain. Patients in support groups also reported higher scores in treatment response and global bother (P<0.05 and P<0.001) respectively. Both reported on small samples (37 and 47 participants), each sample having a similar mean age (61 and 63.5 years). However, the gender ratio of participants varied, with the study reporting positive findings recruiting only male participants (Vakharia et al, 2007) and the other reporting on a group where 60% of participants were female (Mowry and Wang, 2011).

Discussion

This systematic scoping review was performed to select and appraise the literature on peer-to-peer support in HNC and its impact on QoL, and identify the gaps in knowledge.

Peer-to-peer support can be beneficial and allows the sharing of information, however, it also has its disadvantages and may not be suitable for everyone. There is limited literature and only four of the ten papers focused on QoL with two specifically studying the effect of peer-to-peer support on QoL. Neither Vakharia et al (2007) nor Mowry and Wang (2011) found that peer support groups adversely affected QoL, but they disagreed on how beneficial support groups were. Vakharia et al (2007) measured improvement in a number of QoL domains. Mowry and Wang (2011) did not reproduce these results, finding no significant improvement in any of the five QoL domains.

There are unmet supportive care needs in HNC patients and an emphasise on recognising these needs and tailoring treatment to the individual. Van Sluis et al (2020) argued that peer-to-peer support could be one method of fulfilling these needs and matching peers may enhance an individual's experience with peer-to-peer support. However, the range of tumour types and treatments may affect how well individuals relate. This highlighted the lack of homogeneity for HNC and the difficulties of matching, meaning peer support may not address these unmet needs. The diversity of HNC sites covered by the papers reviewed means the patient groups may not be directly comparable as they will face different challenges, for example some may have profoundly different ways of breathing, altered appearance, others may be more bothered by substantial eating and drinking problems.

Patients' needs, expectations and fears regarding peer support are multifaceted. Individuals will have different support needs, and some may not find peer support beneficial. Relating to a peer is a complex issue as some people will relate to each other regarding similar treatment and side effects (Egestad, 2013) whereas others will look for a deeper connection, wanting someone of a similar age and gender (van Sluis et al, 2020).

The majority of papers reviewed focused on in-person support groups; however, the COVID-19 pandemic means there has been a substantial change in meeting and communicating. There is a burgeoning number of online HNC support groups, which could be particularly beneficial for those in rural areas, allowing them to participate without needing to travel (Carroll-Alfano, 2019). Online groups may mean a larger number of patients participate in peer support and therefore there is a greater chance of meeting someone with a similar disease, side effect or personal profile. However, online support will not suit everyone, for example, laryngectomy patients who communicate through writing may struggle with virtual meetings or group video calls. Another platform of support that has increased in recent years and may have provided support for HNC patients during the pandemic is social media, such as the photo-sharing platform Instagram, where patients can document their journey and seek support and community, allowing patients all over the country to connect and share information (Gao et al, 2021).

Knowledge gaps

This review has identified several gaps in the literature, notably a lack of evidence around peer-to-peer support and impact on QoL, and how HNC peer-to-peer support might be best delivered, including mechanisms (eg, groups, remote access), timing and matching peers to patients appropriately. Given the paucity of evidence the authors recommend the gaps are explored using qualitative methodology, in particular in-depth interviewing to investigate patients' experience and preferences regarding peer support.

Minimal reference was made to developing a theory of how peer support might work and whom it might suit. One paper alluded to the sociologist Émile Durkheim's theory, ie that a collective societal consciousness creates social integration (Algtewi et al, 2015). The application of theoretical frameworks is an area worthy of further exploration. It might also be useful to explore the extent to which a patient's motivation impacts on their experience of peer support. Maslow's hierarchy of needs would be a useful theoretical framework to underpin such work (Maslow, 1943).

Comparison with other literature

This scoping review found limited evidence to support the theory that peer-to-peer support improves QoL in HNC. In other tumour groups there are also conflicting results, with some papers reporting it improves QoL and others disagreeing (Tehrani et al, 2011; Taleghani et al, 2012; Toija et al, 2019). These results highlight the need for further research into peer support and QoL in all cancer areas, to unpick these different outcomes.

Barriers to accessing support in HNC are similar to those in breast cancer, with some patients not wanting to access support groups due to fear of meeting someone with more advanced cancer and the lack of availability of support groups (Kemp et al, 2018).

Strengths and limitations

To the authors' knowledge this is the first scoping review to look at peer-to-peer support in HNC and its effect on QoL. The review was conducted systematically and robustly. However, the search was limited to those papers published in English. Due to the small number of papers, the limited sample size and varied study designs, no clear consensus could be reached.

Conclusion

Although it is widely accepted that peer-to-peer support is an important resource in the care of patients with cancer, there is paucity of evidence in how this might improve QoL in HNC patients. The review summarises the current literature and its limitations, highlights the challenges in providing peer-to-peer support and emphasises the need for support to be individualised. Further research is needed to better understand how peer-to-peer support can be optimised in clinical practice and its impact on patients' QoL.

KEY POINTS

  • Head and neck cancer is associated with life-changing effects on quality of life (QoL)
  • Peer-to-peer support has a role in head and neck cancer patient care
  • The number of published studies reporting on peer-to-peer support and impact on QoL in individuals with head and neck cancer is very limited
  • Further clinical evaluation and research is required in order to help better understand and optimise the role of peer-to-peer support for individuals with head and neck cancer

CPD reflective questions

  • What is the published evidence relating to peer-to-peer support and quality of life (QoL) in head and neck cancer?
  • Consider the cohorts and study designs have been used in previous publications—how do they compare with patients you encounter in your practice? Are there any gaps that stand out for you?
  • Reflect on the themes identified in this review of peer-to-peer support and QoL. What impact might they have on discussions with patients regarding sources of support?
  • Consider what some of the unmet supportive care needs for people with head and neck cancer might be