The Experience of Melanoma Follow-Up Care: An Online Survey of Patients in Australia
Identifieur interne : 004147 ( Pmc/Curation ); précédent : 004146; suivant : 004148The Experience of Melanoma Follow-Up Care: An Online Survey of Patients in Australia
Auteurs : Janine Mitchell [Australie] ; Peta Callaghan [Australie] ; Jackie Street [Australie] ; Susan Neuhaus [Australie] ; Taryn Bessen [Australie]Source :
- Journal of Skin Cancer [ 2090-2905 ] ; 2014.
Abstract
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.
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DOI: 10.1155/2014/429149
PubMed: 25535589
PubMed Central: 4254069
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Box DX 650 205, Adelaide, SA 5005, Australia</nlm:aff><country xml:lang="fr">Australie</country><wicri:regionArea>School of Population Health, Level 11 Terrace Towers, 178 North Terrace, The University of Adelaide, P.O. Box DX 650 205, Adelaide, SA 5005</wicri:regionArea></affiliation></author><author><name sortKey="Callaghan, Peta" sort="Callaghan, Peta" uniqKey="Callaghan P" first="Peta" last="Callaghan">Peta Callaghan</name><affiliation wicri:level="1"><nlm:aff id="I1">School of Population Health, Level 11 Terrace Towers, 178 North Terrace, The University of Adelaide, P.O. Box DX 650 205, Adelaide, SA 5005, Australia</nlm:aff><country xml:lang="fr">Australie</country><wicri:regionArea>School of Population Health, Level 11 Terrace Towers, 178 North Terrace, The University of Adelaide, P.O. Box DX 650 205, Adelaide, SA 5005</wicri:regionArea></affiliation></author><author><name sortKey="Street, Jackie" sort="Street, Jackie" uniqKey="Street J" first="Jackie" last="Street">Jackie Street</name><affiliation wicri:level="1"><nlm:aff id="I1">School of Population Health, Level 11 Terrace Towers, 178 North Terrace, The University of Adelaide, P.O. Box DX 650 205, Adelaide, SA 5005, Australia</nlm:aff><country xml:lang="fr">Australie</country><wicri:regionArea>School of Population Health, Level 11 Terrace Towers, 178 North Terrace, The University of Adelaide, P.O. Box DX 650 205, Adelaide, SA 5005</wicri:regionArea></affiliation></author><author><name sortKey="Neuhaus, Susan" sort="Neuhaus, Susan" uniqKey="Neuhaus S" first="Susan" last="Neuhaus">Susan Neuhaus</name><affiliation wicri:level="1"><nlm:aff id="I1">School of Population Health, Level 11 Terrace Towers, 178 North Terrace, The University of Adelaide, P.O. Box DX 650 205, Adelaide, SA 5005, Australia</nlm:aff><country xml:lang="fr">Australie</country><wicri:regionArea>School of Population Health, Level 11 Terrace Towers, 178 North Terrace, The University of Adelaide, P.O. Box DX 650 205, Adelaide, SA 5005</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="I2">Royal Adelaide Hospital, North Terrace, Adelaide, SA 5000, Australia</nlm:aff><country xml:lang="fr">Australie</country><wicri:regionArea>Royal Adelaide Hospital, North Terrace, Adelaide, SA 5000</wicri:regionArea></affiliation></author><author><name sortKey="Bessen, Taryn" sort="Bessen, Taryn" uniqKey="Bessen T" first="Taryn" last="Bessen">Taryn Bessen</name><affiliation wicri:level="1"><nlm:aff id="I1">School of Population Health, Level 11 Terrace Towers, 178 North Terrace, The University of Adelaide, P.O. Box DX 650 205, Adelaide, SA 5005, Australia</nlm:aff><country xml:lang="fr">Australie</country><wicri:regionArea>School of Population Health, Level 11 Terrace Towers, 178 North Terrace, The University of Adelaide, P.O. Box DX 650 205, Adelaide, SA 5005</wicri:regionArea></affiliation><affiliation wicri:level="1"><nlm:aff id="I2">Royal Adelaide Hospital, North Terrace, Adelaide, SA 5000, Australia</nlm:aff><country xml:lang="fr">Australie</country><wicri:regionArea>Royal Adelaide Hospital, North Terrace, Adelaide, SA 5000</wicri:regionArea></affiliation></author></analytic><series><title level="j">Journal of Skin Cancer</title><idno type="ISSN">2090-2905</idno><idno type="eISSN">2090-2913</idno><imprint><date when="2014">2014</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en"><p>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.</p></div></front><back><div1 type="bibliography"><listBibl><biblStruct></biblStruct><biblStruct><analytic><author><name sortKey="Uliasz, A" uniqKey="Uliasz A">A. Uliasz</name></author><author><name sortKey="Lebwohl, M" uniqKey="Lebwohl M">M. Lebwohl</name></author></analytic></biblStruct><biblStruct><analytic><author><name sortKey="Titus Ernstoff, L" uniqKey="Titus Ernstoff L">L. Titus-Ernstoff</name></author><author><name sortKey="Perry, A E" uniqKey="Perry A">A. E. Perry</name></author><author><name sortKey="Spencer, S K" uniqKey="Spencer S">S. K. Spencer</name></author><author><name sortKey="Gibson, J" uniqKey="Gibson J">J. Gibson</name></author><author><name sortKey="Ding, J" uniqKey="Ding J">J. 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<front><journal-meta><journal-id journal-id-type="nlm-ta">J Skin Cancer</journal-id><journal-id journal-id-type="iso-abbrev">J Skin Cancer</journal-id><journal-id journal-id-type="publisher-id">JSC</journal-id><journal-title-group><journal-title>Journal of Skin Cancer</journal-title></journal-title-group><issn pub-type="ppub">2090-2905</issn><issn pub-type="epub">2090-2913</issn><publisher><publisher-name>Hindawi Publishing Corporation</publisher-name></publisher></journal-meta><article-meta><article-id pub-id-type="pmid">25535589</article-id><article-id pub-id-type="pmc">4254069</article-id><article-id pub-id-type="doi">10.1155/2014/429149</article-id><article-categories><subj-group subj-group-type="heading"><subject>Research Article</subject></subj-group></article-categories><title-group><article-title>The Experience of Melanoma Follow-Up Care: An Online Survey of Patients in Australia</article-title></title-group><contrib-group><contrib contrib-type="author"><contrib-id contrib-id-type="orcid" authenticated="false">http://orcid.org/0000-0003-0781-3111</contrib-id><name><surname>Mitchell</surname><given-names>Janine</given-names></name><xref ref-type="aff" rid="I1"><sup>1</sup></xref><xref ref-type="corresp" rid="cor1"><sup>*</sup></xref></contrib><contrib contrib-type="author"><contrib-id contrib-id-type="orcid" authenticated="false">http://orcid.org/0000-0001-6926-0386</contrib-id><name><surname>Callaghan</surname><given-names>Peta</given-names></name><xref ref-type="aff" rid="I1"><sup>1</sup></xref></contrib><contrib contrib-type="author"><name><surname>Street</surname><given-names>Jackie</given-names></name><xref ref-type="aff" rid="I1"><sup>1</sup></xref></contrib><contrib contrib-type="author"><name><surname>Neuhaus</surname><given-names>Susan</given-names></name><xref ref-type="aff" rid="I1"><sup>1</sup></xref><xref ref-type="aff" rid="I2"><sup>2</sup></xref></contrib><contrib contrib-type="author"><name><surname>Bessen</surname><given-names>Taryn</given-names></name><xref ref-type="aff" rid="I1"><sup>1</sup></xref><xref ref-type="aff" rid="I2"><sup>2</sup></xref></contrib></contrib-group><aff id="I1"><sup>1</sup>School of Population Health, Level 11 Terrace Towers, 178 North Terrace, The University of Adelaide, P.O. Box DX 650 205, Adelaide, SA 5005, Australia</aff><aff id="I2"><sup>2</sup>Royal Adelaide Hospital, North Terrace, Adelaide, SA 5000, Australia</aff><author-notes><corresp id="cor1">*Janine Mitchell: <email>janine.mitchell@live.com.au</email></corresp><fn fn-type="other"><p>Academic Editor: Mark Lebwohl</p></fn></author-notes><pub-date pub-type="ppub"><year>2014</year></pub-date><pub-date pub-type="epub"><day>19</day><month>11</month><year>2014</year></pub-date><volume>2014</volume><elocation-id>429149</elocation-id><history><date date-type="received"><day>12</day><month>10</month><year>2014</year></date><date date-type="accepted"><day>7</day><month>11</month><year>2014</year></date></history><permissions><copyright-statement>Copyright © 2014 Janine Mitchell et al.</copyright-statement><copyright-year>2014</copyright-year><license xlink:href="https://creativecommons.org/licenses/by/3.0/"><license-p>This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.</license-p></license></permissions><abstract><p>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.</p></abstract></article-meta></front><floats-group><fig id="figbox1" orientation="portrait" position="float"><label>Box 1</label><caption><p>Examples of participant comments.</p></caption><graphic xlink:href="JSC2014-429149.figbox.001"></graphic></fig><table-wrap id="tab1" orientation="portrait" position="float"><label>Table 1</label><caption><p>Characteristics of patients (<italic>n</italic> = 64).</p></caption><table frame="hsides" rules="groups"><thead><tr><th align="left" rowspan="1" colspan="1">Characteristics</th><th align="left" rowspan="1" colspan="1"> </th><th align="center" rowspan="1" colspan="1">Number of patients</th></tr></thead><tbody><tr><td align="left" rowspan="1" colspan="1">Median age in years (range)</td><td align="left" rowspan="1" colspan="1">50 (21–78)</td><td align="center" rowspan="1" colspan="1">64</td></tr><tr><td align="center" colspan="3" rowspan="1"><hr></hr></td></tr><tr><td align="left" rowspan="2" colspan="1">Sex</td><td align="left" rowspan="1" colspan="1">Male</td><td align="center" rowspan="1" colspan="1">25</td></tr><tr><td align="left" rowspan="1" colspan="1">Female</td><td align="center" rowspan="1" colspan="1">39</td></tr><tr><td align="center" colspan="3" rowspan="1"><hr></hr></td></tr><tr><td align="left" rowspan="6" colspan="1">Highest education level</td><td align="left" rowspan="1" colspan="1">Year 11 or lower</td><td align="center" rowspan="1" colspan="1">10</td></tr><tr><td align="left" rowspan="1" colspan="1">Year 12/HSC</td><td align="center" rowspan="1" colspan="1">6</td></tr><tr><td align="left" rowspan="1" colspan="1">Certificate/trade/apprenticeship</td><td align="center" rowspan="1" colspan="1">9</td></tr><tr><td align="left" rowspan="1" colspan="1">Diploma</td><td align="center" rowspan="1" colspan="1">11</td></tr><tr><td align="left" rowspan="1" colspan="1">Degree or higher</td><td align="center" rowspan="1" colspan="1">27</td></tr><tr><td align="left" rowspan="1" colspan="1">(missing)</td><td align="center" rowspan="1" colspan="1">1</td></tr><tr><td align="center" colspan="3" rowspan="1"><hr></hr></td></tr><tr><td align="left" rowspan="5" colspan="1">Employment status</td><td align="left" rowspan="1" colspan="1">Full-time employee</td><td align="center" rowspan="1" colspan="1">33</td></tr><tr><td align="left" rowspan="1" colspan="1">Part-time employee</td><td align="center" rowspan="1" colspan="1">14</td></tr><tr><td align="left" rowspan="1" colspan="1">Unemployed</td><td align="center" rowspan="1" colspan="1">1</td></tr><tr><td align="left" rowspan="1" colspan="1">Home duties</td><td align="center" rowspan="1" colspan="1">4</td></tr><tr><td align="left" rowspan="1" colspan="1">Retired</td><td align="center" rowspan="1" colspan="1">12</td></tr><tr><td align="center" colspan="3" rowspan="1"><hr></hr></td></tr><tr><td align="left" rowspan="5" colspan="1">Breslow thickness</td><td align="left" rowspan="1" colspan="1"><1 mm</td><td align="center" rowspan="1" colspan="1">13</td></tr><tr><td align="left" rowspan="1" colspan="1">1–3 mm</td><td align="center" rowspan="1" colspan="1">23</td></tr><tr><td align="left" rowspan="1" colspan="1">>3 mm</td><td align="center" rowspan="1" colspan="1">15</td></tr><tr><td align="left" rowspan="1" colspan="1">Not sure</td><td align="center" rowspan="1" colspan="1">11</td></tr><tr><td align="left" rowspan="1" colspan="1">(missing)</td><td align="center" rowspan="1" colspan="1">2</td></tr><tr><td align="center" colspan="3" rowspan="1"><hr></hr></td></tr><tr><td align="left" rowspan="5" colspan="1">Lymph nodes involved</td><td align="left" rowspan="1" colspan="1">Yes, at time of diagnosis</td><td align="center" rowspan="1" colspan="1">7</td></tr><tr><td align="left" rowspan="1" colspan="1">Yes, at a later time</td><td align="center" rowspan="1" colspan="1">14</td></tr><tr><td align="left" rowspan="1" colspan="1">No</td><td align="center" rowspan="1" colspan="1">34</td></tr><tr><td align="left" rowspan="1" colspan="1">Not sure</td><td align="center" rowspan="1" colspan="1">5</td></tr><tr><td align="left" rowspan="1" colspan="1">(missing)</td><td align="center" rowspan="1" colspan="1">4</td></tr><tr><td align="center" colspan="3" rowspan="1"><hr></hr></td></tr><tr><td align="left" rowspan="3" colspan="1">Patients with metastatic disease</td><td align="left" rowspan="1" colspan="1">Yes</td><td align="center" rowspan="1" colspan="1">7</td></tr><tr><td align="left" rowspan="1" colspan="1">No</td><td align="center" rowspan="1" colspan="1">54</td></tr><tr><td align="left" rowspan="1" colspan="1">Not sure</td><td align="center" rowspan="1" colspan="1">3</td></tr><tr><td align="center" colspan="3" rowspan="1"><hr></hr></td></tr><tr><td align="left" rowspan="3" colspan="1">Treatment</td><td align="left" rowspan="1" colspan="1">Completed</td><td align="center" rowspan="1" colspan="1">40</td></tr><tr><td align="left" rowspan="1" colspan="1">Ongoing</td><td align="center" rowspan="1" colspan="1">15</td></tr><tr><td align="left" rowspan="1" colspan="1">Unsure</td><td align="center" rowspan="1" colspan="1">8</td></tr><tr><td align="center" colspan="3" rowspan="1"><hr></hr></td></tr><tr><td align="left" rowspan="2" colspan="1">Secondary disease</td><td align="left" rowspan="1" colspan="1">Secondary melanoma</td><td align="center" rowspan="1" colspan="1">9</td></tr><tr><td align="left" rowspan="1" colspan="1">Secondary nonmelanoma</td><td align="center" rowspan="1" colspan="1">18</td></tr><tr><td align="center" colspan="3" rowspan="1"><hr></hr></td></tr><tr><td align="left" rowspan="7" colspan="1">Follow-up physician</td><td align="left" rowspan="1" colspan="1">General practitioner</td><td align="center" rowspan="1" colspan="1">31</td></tr><tr><td align="left" rowspan="1" colspan="1">Dermatologist</td><td align="center" rowspan="1" colspan="1">29</td></tr><tr><td align="left" rowspan="1" colspan="1">Skin clinic</td><td align="center" rowspan="1" colspan="1">13</td></tr><tr><td align="left" rowspan="1" colspan="1">Surgeon</td><td align="center" rowspan="1" colspan="1">32</td></tr><tr><td align="left" rowspan="1" colspan="1">Oncologist</td><td align="center" rowspan="1" colspan="1">12</td></tr><tr><td align="left" rowspan="1" colspan="1">Radiotherapist</td><td align="center" rowspan="1" colspan="1">5</td></tr><tr><td align="left" rowspan="1" colspan="1">Other</td><td align="center" rowspan="1" colspan="1">2</td></tr><tr><td align="center" colspan="3" rowspan="1"><hr></hr></td></tr><tr><td align="left" rowspan="2" colspan="1">BRaf</td><td align="left" rowspan="1" colspan="1">Yes</td><td align="center" rowspan="1" colspan="1">7</td></tr><tr><td align="left" rowspan="1" colspan="1">No</td><td align="center" rowspan="1" 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