It's the "Good" Cancer, So Who Cares? Perceived Lack of Support Among Young Thyroid Cancer Survivors

Abstract

Patients with thyroid cancer believe that their needs often are overlooked because of high survival rates, and they have difficulty accessing support resources and finding help. Young adults with cancer often have unique support needs. Support needs may not be the same for all young adult patients with cancer, and those needs should be recognized and addressed.

Needs of adolescents and young adults after cancer treatment: a systematic review

“…Most studies (six) were conducted in the United States. But there are other studies from Canada (D'Agostino & Edelstein, ; Easley, Miedema, & Robinson, ; Miedema et al., ; Zebrack, ), Switzerland (Gianinazzi et al., ), the Netherlands (Knijnenburg, Kremer, van den Bos, Braam, & Jaspers, ), Sweden (Sundberg, Lampic, Arvidson, & Wettergren, ) and Australia (Millar, Patterson, & Desille, ). The sample size ranged from as few as 20 participants (Rabin, Simson, Morrow, & Pinto, , ) to as many as 1,088 (Zebrack, Mills, & Weitzman, ).…”

“…Eight studies used a quantitative methodology and the other six used a qualitative methodology. Of those using a qualitative methodology, four used ad hoc open‐ended questionnaires (Easley et al., ; Miedema et al., ; Rabin et al., , ), one another used a focus group (D'Agostino & Edelstein, ) and a last one conducted a Delphi study that included patients and professionals (Zebrack et al., ). Of the eight using a quantitative methodology, six used a questionnaire (Gianinazzi et al., ; Keegan et al., ; Knijnenburg et al., ; McClellan et al., ; Millar et al., ; Sundberg et al., ; Zebrack, ) and the other one asked participants to put a list of needs provided by the authors in order of importance (Zebrack et al., ).…”

Following patient pathways to psycho‐oncological treatment: Identification of treatment needs by clinical staff and electronic screening

“…Still, an alarmingly high percentage of distressed patients is unrecognised and untreated in clinical practice . This is particularly true for patients with thyroid carcinoma (ThyCa) who report to be considered to have “the good cancer,” which not only imposes additional burden but also impedes their access to psychosocial care . These patients' unrecognised QOL impairments and unmet psychosocial treatment needs have only recently gained attention …”

Lebensqualität und psychische Belastungen von Schilddrüsenkrebspatienten

“…Sie sehen eine für sie folgenreiche Diagnose häufig trivialisiert und fühlen sich mit somatischen Beschwerden sowie Sorgen und Ängsten nicht ernstgenommen. Der Versuch der Entlastung des Patienten durch die häu-fig gebrauchte Bezeichnung "guter Krebs" wird eher befremdlich oder sogar abwertend erlebt und ist nicht dafür geeignet, die Krankheitsverarbeitung zu unterstüt-zen [8,23].…”

“…Selbsthilfegruppen hät-te ihre Behandlung deutlich verbessert [1]. Die wesentliche Zusatzbelastung, die Patienten durch den Mangel an entsprechenden Unterstützungsangeboten entsteht, haben Easley et al[8] in einer qualitativen Studie abbilden können.Ähnliche Ergebnisse bezüglich eines Informationsdefizits bei Schilddrüsen-krebspatienten lieferten Husson et al[16]. Von 306 erkrankungsfreien Patienten gaben zwischen 20% und 91% Mängel hinsichtlich der Information zu verschiedenen medizinischen Aspekten an.…”