Introduction: Traditional oncological measures, e.g. survival or disease-free progression, whilst obviously essential to assess effectiveness of cancer care, fail to fully capture the patient’s experience of their cancer journey. Patient Reported Outcomes (PROs) are any reports of the status of a patient’s health condition that come directly from the patient, without interpretation of the patient’s response by a clinician or any one else. We used PROs to assess patient experiences in (a) a supervised RCT of immediate versus delayed exercise programmes in patients with haematological malignancies; and (b) in SolarisCare centres that innovatively provide cancer patients with access to safe and supervised complementary integrative therapies (CITs).
Methods (a) RCT of immediate versus delayed exercise: Between July 2010 and December 2011, haematological cancer patients who had completed treatment were randomly assigned to immediate (IEG; n=18) or a 12-week delayed exercise program (DEG; n=19). The best practice intervention incorporated aerobic and resistance training three times per week for 12-weeks. Patient rated outcomes (PRO) included cancer related fatigue (CRF), quality of life (QoL), psychological distress, exercise habit and behaviour. (b) RCT to assess CITs in SolarisCare centres: Across 4 centres (2 metropolitan, 2 in rural/regional centres that provide mainstream cancer care), 135 patients accessed CIT services during outpatient cancer treatment. Of these, 66 (mean age 61 years +/- 12 years; female n=45, male n=21) agreed to complete a personal accounts questionnaire consisting of open-ended questions to explore their perceptions of CIT. All results were transcribed using nVivo(v9). Using thematic analysis, key themes were identified.
Results (a): Patient adherence to the exercise was 85%, with patients completing, on average, 74 min per week of aerobic exercise and strength training intensity ranging from 51%-87% of maximum weight. A significant interaction was seen for PRO and physiological outcomes including CRF (p=0.01), QoL (p≤0.001), aerobic fitness (p≤0.001) and muscle strength (p≤0.001). (b): Of the 66 participants, 100% indicated they would “recommend complementary therapies to other patients” and 92% stated CIT would play a significant role in their future lifestyle. Patients’ perception of well-being improved; central themes of empowerment, support and relaxation were identified.
Conclusions (a): A 12-week exercise program, whether commenced immediately post treatment or delayed by 12-weeks, resulted in significant statistical (p≤0.001) and clinical improvements in PRO, including QoL and CRF, and physiological outcomes including aerobic fitness, in haematological cancer patients without exacerbation of symptoms. (b): Exploration of patients’ experiences revealed uniformly positive results. In order to effectively target integrative support services it is crucial to explore the experiences of patients in their own words and use those forms of expression to drive service delivery.