“My cancer is not my deepest concern”: life course disruption influencing patient pathways and health care needs among persons living with colorectal cancer

Abstract

BackgroundThe concept of “patient pathways” in cancer care is most commonly understood as clinical pathways, operationalized as standardized packages of health care based on guidelines for the condition in question. In this understanding, patient pathways do not address multimorbidity or patient experiences and preferences. This study explored patient pathways understood as the individual and cultural life course, which includes both life and health events. The overall aim was to contribute to supportive and targeted cancer care.Materials and methodsNine Norwegian patients recently diagnosed with rectal cancer Tumor-Node-Metastasis stage I–III participated in qualitative interviews, five times over 1 year. Five patients later participated in a workshop where they made illustrations of and discussed patient pathways.ResultsPatient pathways including both health and life events were illustrated and described as complex and circular. Stress, anxiety, and depression caused by life events had significant disruptive effects and influenced patient-defined health care needs. The participants experienced the Norwegian public health service as focused on hospital-based standardized cancer care. They expressed unmet health care needs in terms of emotional and practical support in their everyday life with cancer, and some turned to complementary and alternative medicine.ConclusionThis study suggests that acknowledging life course disruption before cancer diagnosis may have significant relevance for understanding complex patient pathways and individual health care needs. Approaching patient pathways as individual and socially constructed may contribute important knowledge to support targeted cancer care.

A systematic review of the supportive care needs of people living with and beyond cancer of the colon and/or rectum

“…Where reported, 30% (518/1747) had a stoma. Seventeen studies focused on the post-treatment period only (Anderson et al, 2013;Baravelli et al, 2009;Beaver et al, 2010;Beckjord et al, 2008;Di Fabio et al, 2008;Ho et al, 2016;Holm et al, 2012;Husson, 2013;Jefford et al, 2011;Klemm et al, 2000;McCaughan et al, 2012;Morrison et al, 2012;Russell et al, 2015;Salkeld et al, 2004;Salz et al, 2014;Santin et al, 2015;Taylor et al, 2012), 13 studies focused on the post-operative period only (Andersson et al, 2010;Browne et al, 2011;Cha et al, 2012;Galloway and Graydon, 1996;Harrison et al, 2011;Jorgensen et al, 2012;Lithner et al, 2015Lithner et al, , 2012Nikoletti et al, 2008;Northouse et al, 1999;Ran et al, 2016;Salamonsen et al, 2016;Sanoff et al, 2010), 2 studies examined the transition from the pre-operative to the post-operative period (Carlsson et al, 2010;Worster and Holmes, 2008), whilst 2 studies specifically explored 193 needs during curative (Kidd, 2014) and during palliative treatment (Sjövall et al, 2011). The remaining 19 studies 194 relied on mixed samples of patients, who were at different treatment phases.…”

“…Oncol. 26, 1846-1858. doi:10.1093/annonc/mdv181 Howell, D., Oliver, T.K., Davidson, J.R., Garland, S., Samuels, C., Savard, J., Harris, C., Aubin, M., Olson, K., Sussman, J., Macfarlane, J., Taylor, C., Keller-Olaman, S., Davidson, J.R., Garland, S., Samuels, C., Savard, J., Harris, C., Aubin, M., Olson, K., Sussman, J., Macfarlane, J., Taylor, C., 2014 Harrison et al, 2011;Holm et al, 2012;Jorgensen et al, 2012;Morrison et al, 2012;Salamonsen et al, 2016;Wiljer et al, 2013) when trying to deal with fear of the cancer returning or spreading (20-56%) (Anderson et al, 2013;Boudioni et al, 2001;Browne et al, 2011;Ho et al, 2016;Jefford et al, 2011;Klemm et al, 2000;Macvean et al, 2007;Northouse et al, 1999;Russell et al, 2015;Santin et al, 2015;Shun et al, 2014;Taylor et al, 2012) 85%; 70%-90% 76%; 70%-95% 2 Information/education More information about diet/nutrition (46-98%) (Anderson et al, 2013;Beaver et al, 2010;Beckjord et al, 2008;Boudioni et al, 2001;Cha et al, 2012;Dunn et al, 2006;Harrison et al, 2011;Knowles et al, 1999;Lithner et al, 2015;Nikoletti et al, 2008;Pullar et al, 2012;Rozmovits et al, 2004;Sahay and Gray, 2000;Salz et al, 2014;Taylor et al, 2012) in the form of a pamphlet (90%) or by a hospital dietician (53%) (Pullar et al, 2012) 73%; 44%-95%…”

“…Weight changes (loss/gain) (Anderson et al, (Northouse et al, 1999) -1. Emotional support and reassurance (16-33%) (Hansen et al, 2013;Harrison et al, 2011;Holm et al, 2012;Jorgensen et al, 2012;Morrison et al, 2012;Salamonsen et al, 2016;Wiljer et al, 2013) when trying to deal with fear of the cancer returning or spreading (20-56%) (Anderson et al, 2013;Boudioni et al, 2001;Browne et al, 2011;Ho et al, 2016;Jefford et al, 2011;Klemm et al, 2000;Macvean et al, 2007;Northouse et al, 1999;Russell et al, 2015;Santin et al, 2015;Shun et al, 2014;Taylor et al, 2012) 85%; 70%-90% 76%; 70%-95%…”

“…Support when dealing with uncertainty about the future (33-35%) (Browne et al, 2011;Carlsson et al, 2010;Klemm et al, 2000;Macvean et al, 2007;Northouse et al, 1999;Shun et al, 2014) 77%; 46%-90% 3. Support to come to terms with the diagnosis and deal with feelings of shock and mental isolation (Carlsson et al, 2010;Salamonsen et al, 2016;Worster and Holmes, 2008) 73%; 73%-85% 4. Psychological support (Di Fabio et al, 2008) especially in relation to feelings of abandonment after treatment is over (Ho et al, 2016;McCaughan et al, 2012) 77%; 75%-80% 5.…”

“…Better coordination/communication among healthcare professionals (primary and secondary care) (15-68%) (Bain and Campbell, 2000;Bain et al, 2002;Jefford et al, 2011;Northouse et al, 1999;Russell et al, 2015;Salamonsen et al, 2016;Santin et al, 2015) 72%; 61%-90%…”