_____ DelbrUck / Rehabilitacija - letn. VII, supl. 2 (2008) ___________ _ MEASUREMENTS TO CONTROL QUALITY OF CANCER REHABILITATION Prof. dr. Hermann Delbruck Arbeitsgemeinschaft fur Rehabilitation, Nachsorge und Sozialmedizin (ARNS), Germany QUALITY ASSURANCE ANO REHABILITATIVE MEASURES To guarantee quality of rehabilitation and palliation you have to en sure quality of structures, quality of rehabilitative meas­ ures and to evaluate outcome of rehabilitative measures. As with acute therapy, certain guidelines and quality assur­ ance procedures should also apply to rehabilitation and pal­ liation ( 1 -3). Unfortunately there are only few guidelines on this subject for cancer patients. There are hundreds of national and international guidelines for general care of cancer but only few of them include rehabilitational aspects. (4, 5). Quality of structural features: Rehabilitation in cancer patients can only be achieved through the work of a qualified rehabilitation team (figure 1 ). Special experience and a specialised inf r astructure are essential. The rehabilitation team should be coordinated by a physician experienced in rehabilitation and palliation with demonstrable oncological knowledge. Physiotherapists play an important role in this team. The collaboration of psycho­ oncologists is very useful. Social workers are essential because of the social aids that are often needed. Coopera­ tion and exchanging information with the previously and subsequently treating physicians are important. Figure 1 REHABILITATION TEAM phys,c,ans experienced ,n rehab1htat1ve medicine and oncology as well spee ch thera pi st \ / ,n onco logy fam,ly I psycholog, . sc exper . 1enced � , \ / / phys,otherap,st self-help group ---- � -----._ =.--- ergotherap,st clergyma n _ _ Patient --._ /2 --- are therap,st prosthetic therap,st . fi I � soc ,al wo . rker nutrit,onal therap1st / \ ostomy therap,st vocatmnal adv,ser nurse m Cancer rehabilitation services include critical components of assessment, physical reconditioning, skill training, and psychosocial support. They may include vocational evalu­ ation and counselling. Due to the experience necessary, the rehabilitative institu­ tion should care a certain minimum of cancer patients per year. (5, 1 ). Quality of medical and therapeutic processes Yerifiability of the quality of rehabilitation and palliative therapies must be guaranteed. An assessment of rehabilita­ tive needs is essential. Ali members of the cancer rehabili­ tation team should participate in the patient's assessment. The initial evaluation should include the medical history; diagnostic tests; current symptoms and complaints, physical assessment, psychologic, social, or vocational needs, nutri­ tional status, exercise tolerance, detennination of educational needs, the patient's ability to carry out activities of daily living and patient's interests and compliance. In rehabilitation and palliation it is not the rehabilitation team alone, but also the patient who takes on the task of assessing many treatment measures although expectations of a successful treatment are often very different in patients. Many patients accept rehabilitative and palliative therapies for reasons that are possibly quite different f r om those of the physicians who recommend it. Comparisons with patient­ reported symptoms f r om the quality of life questionnaire have shown, that physicians fail to report approximately one half of the symptoms identified by the quality of life questionnaire as adverse events. and the quality of life questionnaires did not detect approximately one half of the symptoms (6). The rehabilitation therapeutic program must be tailored to meet the needs of the individual patient, addressing age-specific and cultural variables, and should contain patient-determined goals, as well as goals established by the individual team. Outcome evaluation of rehabilitative measures Quality of life questionnaires of the European Organization for Research and treatment of cancer (such as EORTC- ____________ DelbrUck / Rehabilitacija - letn. VII. supl. 2 (2008) ___________ _ BR23, EORTC QLQ C-30 and the functional assessment of cancer therapy (Fact-B) can be used. Both are internationally validated questionnaires and have been used on multiple studies. They are composed of multi-item scales and yes/ no questions assessing physical, role functioning, cognitive, emotional, and social effects. The evaluation of rehabilitative measures in cancer patients is directed not at survival tirne, but rather at quality of life criteria. This involves primarily subjective and objective parameters such as improvement of pain. mobility, physical fitness. overcoming fears etc (for example table for breast cancer patients). In general these parameters are not found in outcome assessment and evaluation of primary therapy (response, remission and length of remission). The evaluation of rehabilitative and supportive measures is much more difficult than checking the outcome of inter­ vention procedures generally used in potentially curative follow-up care (length of recurrence-f r ee period, detection of early recurrence) Outcome assessment in most clinical trials is affected by a purely medica! undcrstanding of the disease. This is reflected in the predominant use of oncological symptoms as the content of outcome measures. The assessment of other health aspects like psychic symptoms, interpersonal or social consequences of the discase, seems to be similarly, if not more, important and should be considered in quality control of rehabilitation. Measurements of quality of lite Studies of quality of life in cancer patients have been per­ formed mainly in therapcutic trials in order to assess the dis­ ease and treatment of speci fic symptoms. The studies mainl y used performance status as a proxy regarding quality of life, even though there is only a weak association between the performance status such as the Karnofsky Performance scale and the quality of life as measured by the EORTC QLQ-C30 (7). Palliation of symptoms, psychosocial interventions, and understanding patient 's feelings and concerns ali contribute to improving quality of life in cancer paticnts. Activities of daily life play an important role in rehabilita­ tion. Widely used measures to asses activities of daily life are the functional independence measure or thc Barthel lndex (8). Different outcome scales in palliative care of cancer patients have been developed (9, 10). The scales cover physical and psychic symptoms, spiritual considerations, practical concerns, emotional concerns of the patient and family. and psychosocial needs of the patient and family. The Pal­ liative Care Outcome Scale (POS) is a multidimensional instrument covering these physical, psychosocial, spi ritual, organizational, and practical concerns. Basically, improvement in quality of lite aimed at in reha­ bilitation is achieved when less nursing carc is necessary ("rehabilitation to combat the need of care"), when the Table 1: Possible therapewic ai111s and their effectil'e11ess parameters in the rehabilitation and palliation.