globally , australia has the highest incidence of melanoma , with annual rates continuing to rise . individuals with a primary melanoma have 812% risk of developing a second primary melanoma and an increased risk of developing a nonmelanoma skin cancer [ 25 ] , and therefore posttreatment monitoring for recurrence and new primary melanomas is important . the purpose of follow - up is to detect recurrence and/or progression at an early treatable stage , identify treatment - related morbidity ( e.g. , lymphoedema ) , identify new melanoma or nonmelanoma skin cancers , and provide reassurance and education . good practice in follow - up includes effective coordination of care , consistency in care provision [ 7 , 8 ] , evidence - based testing , and psychosocial support [ 69 ] . patient perceptions can provide valuable insight into the quality of melanoma follow - up care and identify potential areas for improvement . quality of patient care can be defined in both technical and interpersonal terms . here , technical  refers to best practice based on current evidence coupled with care providers ' knowledge , judgment , and skill in implementation . the 2008 australian cancer network melanoma guidelines publication describes best practice guidelines for melanoma follow - up , including judicious use of imaging and blood tests , patient education for detection of recurrence and new primary melanomas , and scheduling follow - up visits with health professionals , on the basis of stage of the cancer , familial history , and patient ability to perform self - examination . the success of technical care depends , in part , on the management of interpersonal care , including factors such as communication , empathy , and trust . the subjective nature of interpersonal care makes it a difficult construct to measure ; therefore , patient satisfaction can be one measure , with self - reported measures of satisfaction helping to determine the values patients themselves associate with quality of care . measures of patient satisfaction consist of both cognitive evaluation and emotional response to the structure and process and outcome of health services received . the amount and clarity of information received correspond with the cognitive evaluation , whilst the emotional responses encompass psychosocial factors such as receiving adequate support . the psychosocial interventions advocated by the 2008 australia and new zealand clinical practice guidelines include cognitive - behavioural group therapy and psychoeducation and access to support groups . previous research on melanoma patients ' experiences in australia at follow - up consults recommended a tailored approach to follow - up care with adequate provision of information enabling patients to participate in shared decision - making . overall high levels of satisfaction with follow - up care were reported by morton et al . ; however , the sample was restricted to patients adhering to follow - up schedules in specialist melanoma centres , potentially targeting only those patients who had a positive experience . similarly , a systematic review of 15 studies examining the psychosocial aspects of melanoma follow - up care reported high levels of patient satisfaction although none of the studies were australian . in particular , the guidelines are based on low - level evidence leading to variation in practice . this study was conducted to investigate if new knowledge in follow - up care in australia was essential towards fulfilling the health needs of melanoma patients . we used an online survey distributed across a variety of settings , including nonmetropolitan and multistate , for participant recruitment . our study aimed to collect the views of patients with a broad base of experience in melanoma follow - up care in australia , investigating patient perceptions of both the technical and interpersonal aspects of the quality of their follow - up care . purposive sampling ensured that only patients with experience of melanoma follow - up care participated . selection criteria excluded patients diagnosed in the previous year , as such patients were deemed to be in  treatment phase  and not in follow - up care . one hundred and fifty patients accessed the questionnaire with 33 incomplete surveys and 53 surveys that were excluded as the participants were diagnosed before 2007 . the remaining 64 participants were included ensuring that only current data on follow - up care was used for this analysis . an online information sheet preceded the questionnaire to inform participants about the study and obtain consent . predominantly with  tick box  format , collected information about patient demographics , nature of the melanoma , treatment details , and nature of follow - up care , including the assessment of survivor concerns , as developed by gotay and pagano . a pilot study with 5 melanoma patients recruited through a surgical oncologist tested the survey before dissemination . pilot study participants emphasised the emotional aspects of melanoma follow - up care . as a result free - boxes permitted participants the opportunity to elaborate on their survey responses and contribute further comments . australian state and national organisations involved in melanoma care were approached to support the project ensuring a range of patient experiences , unrestricted by a single specialist centre . the following organisations supported advertisement and recruitment through their websites and networks : melanoma patients australia , the cancer council of south australia and the cancer council of australian capital territory , the australia and new zealand melanoma trials group , the melanoma institute australia , the national melanoma symposium ( melbourne , 2012 ) , melanoma wa , and sunbedban . ethics approval was obtained from the university of adelaide human research ethics committee ( number h-2012 - 037 ) . analysis was supported by ibm spss version 19 , armonk , ny , usa ( quantitative analysis ) and nvivo 10.1 ( qualitative analysis ) . in thematic analysis , as detailed by braun and clarke , the data were independently coded by two authors ( peta callaghan and jackie street ) with iterative discussion to determine concurrence and resolve discrepancies . after open coding , overarching themes were derived , condensing smaller categories : for example , categories relating to mental health and emotional issues , including counselling , fear , stress , and need for reassurance were grouped to form the overarching theme and psychosocial factors . we were interested in exploring patients ' experiences of their care , including information needs , degree of anxiety , experience of follow - up care , and perspectives on potential benefit of a follow - up care coordinator . patient satisfaction was determined by three questions that assessed patient experiences of adequate support during follow - up care , patient satisfaction with the amount of information received , and patient preferences for a coordinator to manage follow - up care . many participants reported that they did not receive adequate support during follow - up ( 51.6% ) , that they would have liked to receive more information from their health professionals ( 64.1% ) , and that they would like a coordinator to organise their melanoma follow - up care ( 62.5% ) . whilst the categorical nature of our data restricted multivariate analysis , general response patterns were identified . participants not supporting the use of follow - up care coordinators also generally reported receiving adequate support and being satisfied with information provision from their health professionals . this trend was also found in the opposite direction : participants supporting the use of a coordinator generally described inadequate support and information provision during follow - up care . surgeons were the most frequently reported health professional seen ( 32 participants ) , followed by dermatologists ( 30 participants ) , although 8 patients saw both . intervals between visits varied considerably across the patient group ; for example , patients with < 1  mm melanomas reported being seen 3 monthly . although 31 patients reported that they regularly saw a general practitioner , it is possible that the reason for these visits may not have specifically related to melanoma follow - up . a minority of participants ( 22% ) reported regular consults with three or more melanoma specialists . in follow - up care ( after the initial 12-month treatment phase ) , the most common diagnostic test described was a computed tomography ( ct ) scan ( 41 participants ) , followed by positron emission tomography ( pet ) scans ( 17 participants ) and chest x - rays ( cxr ) ( 11 participants ) . patients constructed the provision of more scans as a means of reassurance ( box 1 ) . patient awareness of the superiority of self - examination to monitor future risk was not reflected strongly in our data with only one participant explicitly reporting conducting their own skin checks . comments from many participants indicated that they were unaware of the benefits of skin checks or how to perform adequate self - examination . in line with previous research , the most common type of dissatisfaction expressed was with the type of communication and information offered . sixty - four percent of participants reported they would have liked more information about melanoma , and comments about the quantity and quality of communication dominated the qualitative data . for many participants ( 40.6% ) websites were the main sources of information on melanoma , with the second main source being surgeons ( 25% ) . nearly half of the participants ( 46.9% ) reported not receiving written information , and around 70% reported receiving no information on cancer services , patient support websites , or generic sun protection measures ( e.g. , avoidance of solariums , use of sunscreens ) . thirty - eight participants ( 59.4% ) received a copy of their melanoma pathology report , but only 3 ( 4.7% ) received a written follow - up plan . lack of information was the most commonly reported theme in this category ; however , conflicting information and the need for ongoing information due to  forgetting  were also reported . communication was constructed in 2 primary ways : communication between professionals and communication with professionals . within these categories , three themes were expressed : poor communication , ideal communication , and good communication with poor communication reported as the most common experience ( box 1 ) . the lack of information ( received or perceived ) meant many participants accessed information themselves via the internet ; however , participants also indicated that poor communication with their health care professional meant they often did not know what to look for or which information applied to them . four participants voluntarily reported having changed health professionals due to dissatisfaction with quality of care , a finding in accord with previous research [ 11 , 18 ] . interestingly , each of these participants also reported satisfaction with the care provided by their subsequent health professional . with respect to patients ' fears and concerns , 29 ( 45.3% ) participants reported that they received inadequate support . concern was highest in relation to cancer recurrence and the impact on their children 's health . having a coordinator ( defined as a person to assist in organising follow - up care ) the qualitative analysis supports this finding with many participants equating coordination with improved support and information provision . whilst some participants felt that they themselves did not require a coordinator , for a few participants this was constructed as entirely due to personal characteristics : strong support for a care coordinator in concert with concerns about gaps in care and communication ( box 1 ) indicates that , for these participants , structural support for melanoma follow - up care within the health care system was inadequate . in addition , participants indicated ( box 1 ) that lack of consistent support and information compounded the stress and fear associated with melanoma follow - up . moreover , provision of reassurance from health professionals was constructed as an essential element of quality of care . unlike previous research into patient perceptions of the quality of melanoma follow - up care in australia , our findings indicate considerable dissatisfaction with the quality of care received . the sampling of patients via websites and online support groups provides a cohort of melanoma patients including more nonmetropolitan participants and participants from multiple states than those reported in morton et al . , where participants were recruited from a specialist follow - up centre . the findings suggest that there was considerable variability in perceived quality of care , and for many participants in our study , psychosocial support and information provision were inadequate . both factors appeared to affect patients ' sense of control , a finding mirrored in previous research . this study also identified considerable variance in follow - up practice in our participants ' group with variation in the types of doctors seen and frequency of visits and indications of duplication of care . this finding mirrors a 2011 netherlands study , where patients were reportedly receiving more follow - up visits than being clinically indicated . in addition , australian and new zealand guidelines recommend that patients themselves should play a central role in monitoring for recurrence or new primary melanomas . our findings suggest that essential education for self - examination , to support such monitoring , may be lacking . the australian and new zealand guidelines do not recommend radiological tests ( cxr , ct , and pet ) in early stage melanoma   with the evidence indicating that routine imaging has minimal value in follow - up , and the additional cost can not be justified [ 6 , 19 ] . some participants reported they would like more testing , and others reported excessive testing across the spectrum of disease . however , our findings must be interpreted with caution , as assessing the  appropriateness  of imaging for each patient ( e.g. , based on patient , tumour , and treatment characteristics ) was beyond the scope of this study . lack of information and poor communication were associated with seeking information online , but this did not always provide an adequate alternative . high internet usage for unmet needs has been reported elsewhere   and attests to the desire of patients to be fully informed . participants reporting they had forgotten information used the terms  explosion  and  shock  ( box 1 ) , suggesting intense emotional reaction to diagnosis of melanoma , may make it difficult to retain information provided . previous studies have indicated the need for ongoing tailored discussions with patients about their care throughout the  cancer journey  [ 21 , 22 ] . patient fears for their children 's health and their own cancer recurring are reasonable given the evidence of recurrence risk and familial predisposition [ 6 , 23 ] . despite evidence that such concerns may be decreased with education and support [ 23 , 24 ] , our study suggests that many patients with melanoma receive inadequate support for psychosocial issues . oliveria et al . showed that patient perceptions of inadequate support through the health care system could lead to suboptimal health outcomes . provision of a care coordinator , expressed as being of value by over half of the study participants , has been demonstrated to improve health outcomes in breast cancer patients   and may go some way to providing mental and emotional support . the online nature of the study presents selection bias and although potentially widely accessible across australia , the number of participants was small . therefore , the findings may not be representative of national experience of patients undergoing melanoma follow - up . as a retrospective study , the possibility of recall bias is also acknowledged . reliance on categorical data limited analysis , making it difficult to assess relationships amongst variables . this study provides insights into the nature of melanoma follow - up care in australia . we identify perceived gaps in patient care , perceptions of inadequate support and information , and variance in patterns of care , all of which suggest that the quality and consistency of melanoma follow - up care in australia can be improved . moreover , follow - up care is iterative and the needs of patients , including information , emotional support , and medical care , may be very different from their needs during the treatment phase . according to our data , it appears that these changing needs are not being widely addressed . moreover , the variation in patterns of care suggests the australian and new zealand clinical practice guidelines are not being consistently followed . our data suggest that provision of targeted support and information from health professionals may improve long - term patient self - care . whilst this finding deserves greater attention in future research , we also suggest that a focus on developing strategies for generating greater adherence to the clinical guidelines , including the stringent use of investigations as recommended , may generate a cost dividend which could be reinvested in preventive and supportive care . we suggest that greater consistency in the provision of emotional support and information throughout treatment and follow - up phases of melanoma follow - up care could enhance patient well - being .
investigating patients ' reports on the quality and consistency of melanoma follow - up care in australia would assist in evaluating if this care is effective and meeting patients ' needs . 
 the objective of this study was to obtain and explore the patients ' account of the technical and interpersonal aspects of melanoma follow - up care received . 
 an online survey was conducted to acquire details of patients ' experience . 
 participants were patients treated in australia for primary melanoma . 
 qualitative and quantitative data about patient perceptions of the nature and quality of their follow - up care were collected , including provision of melanoma specific information , psychosocial support , and imaging tests received . 
 inconsistencies were reported in the provision and quality of care received . 
 patient satisfaction was generally low and provision of reassurance from health professionals was construed as an essential element of quality of care . 
 gaps  in follow - up care for melanoma patients were identified , particularly provision of adequate psychosocial support and patient education . focus on strategies for 
 greater consistency in the provision of support , information , and investigations received , may generate a cost dividend which could be reinvested in preventive and supportive care and benefit patient well - being .