Perceived symptoms and quality of life in women with breast cancer receiving radiation therapy

Perceived symptoms and quality of life in women with breast cancer receiving radiation therapy Yvonne WengstrÎm,Caroline HÌggmark, Hans Strander, Christina Forsberg The purpose of this study was to describe symptoms, side-effects and quality of life (QoL) of women with breast cancer during and following treatment with radiation therapy. The sample consisted of 134 women with breast cancer. Symptoms were measured using a modif|ed version of the OncologyTreatment ToxicityTool (OTTAT) and QoL was measured using the Cancer Rehabilitation Evaluation System-short form (CARES-sf). The results showed an increase in experienced symptoms and their severity as the treatment progressed.QoL was perceived as poorest at baseline before treatment had started. During the treatment,QoL scores leveled out and an improvement could be seen after completion of treatment. The study f|ndings provide directions and suggestions for assessment and management of perceived symptoms for women receiving radiation therapy for breast cancer from the second week and up to 2 weeks after completion of therapy is the critical time-period for targeting interventions for experienced symptoms and side-effects from radiation therapy. # 2000 Harcourt Publishers Ltd Keywords: side-e¡ects, symptoms, QoL, radiation therapy, breast cancer patients

Yvonne WengstrÎm OCN, Doctoral student, Division of Nursing Research at Karolinska Hospital, BorgmÌstarvillan 1 tr,171 76 Stockholm, Sweden Caroline HÌggmark RN, PhD, Hans Strander, MD, PhD, Department of Oncology, Karolinska Insitutet, Christina Forsberg RN, PhD, Division of Nursing Research at Karolinska Hospital, Department of Medicine, Karolinska Institutet and Red Cross College of Nursing and Health, Sweden Correspondence and o¡print requests to: Yvonne WengstrÎm

Wahrgenommene Symptome und LebensqualitÌt bei Brustrkebspatientinnen wÌhrend der Radiothrapie Ziel diesar Untersuchung war, die Symptome, Nebenwirkungen und LebensqualitÌt (QoL) von Brustkrebskranken wÌhrend und nach einer Radiotherapie zu beschreiben. Die Symptome von 143 Patientinnen wurden an einer abgeÌndertenVersion derToxzitÌtsskala von Krebsbehandlungl (OTTAT) gemessen. Die LebensqualitÌt wurde nach dem Rehabilitations Auswertungssystem-Kurzform (CARES-sf) gemessesn. Das Ergebnis zeigte einen Anstieg der wahrgenommenen Symptome und ihrer IntensitÌt mit Verlauf der Behandlung. Die schlechteste LebensqualitÌt vor Beginn der Behandlung wurde als Grundlinie festgelegt.WÌhrend der Behandlung stabilisierte sich die QoL. Nach der Behandlung wurde ein Anstieg der Symptome verzeichnet. Die Untersuchungsergebnisse bieten Hinweis und VorschlÌge fÏr die Bewertung und das Mangement von wahrgenommenen Symptomen bei Patientinnen wÌhrend einer Strahlentherapie bei Brustkrebs. Die zweite Woche nach Behandlungsbeginn bis zur tweiten Woche nach Behandlungsende ist der kritischste Zeitraum fÏr zielgerichtete Interventionen bei wahrgenommenen Symptomen und Nebenwirkungen einer Radiotherapie.

Sintomas percibidos y calidad de vida en mujeres con ca¨ncer de mama tratadas con radioterapia La f|nalidad de este estudio era describir los sintomas, efectos secundarios y calidad de vida (QoL) de mujeres con ca¨ncer de mama durante el tratamiento con radioterapia y despue¨s del mismo. La muestra consistio¨ en 134 mujeres con ca¨ncer de mama. Los sintomas se midieron utilizando una versio¨n modif|cada de la Herramienta de Toxicidad del Tratamiento Oncolo¨gico (QTTAT) y la QoL se midio¨ utilizando la forma abreviada del Sistema de Evaluacio¨n de Rehabilitacio¨n del Ca¨ncer (CARES-sf). Los resultados indicaron un aumento de los s|¨ ntomas experimentados y de su intensidad a medida que avanzaba el tratamiento. La QoL fue percibida como ma¨s baja en la l|¨ nea de base antes de comenzar el tratamiento. Durante el tratamiento, las puntuaciones QoL se estabilizaron y se pudo observar una mejora despue¨s de concluir el tratamiento. Los resultados del estudio proporcionan indicaciones y sugerencias para la evaluacio¨n y el tratamiento de los s|¨ ntomas percibidos en las mujeres tratadas con radioterapia por ca¨ncer de mama. Hay un per|¨ odo cr|¨ tico desde la segunda semana hasta 2 semanas despue¨s de concluir el tratamiento para enfocar las intervenciones debido a s|¨ ntomas experimentados y efectos secundarios de la radioterapia.

European Journal of Oncology Nursing 4 (2), 78 ^ 88 # 2000 Harcourt Publishers Ltd doi:10.1054/ejon.1999.0052, available online at http://www.idealibrary.com on

Perceived symptoms and quality of life in women with breast cancer receiving radiation therapy 79

Radiation therapy is received by approximately 40% of all patients with breast cancer, as a primary adjunctive or palliative intervention (SBU 1996). Following primary surgery radiation therapy plays an important role in the management of loco-regional recurrence of breast cancer (Rutqvist 1996). Endocrine therapy and chemotherapy constitute other common treatments for breast cancer. As a result of two recent randomized clinical trials (Overgaard et al. 1997, Ragaz et al. 1997), it is suggested that all mastectomized patients with tumor positive lymph nodes should receive a combination of adjuvant chemotherapy followed by radiation therapy. An increased overall survival was established for patients receiving this mode of treatment. Breast cancer patients may perceive vague symptoms such as fatigue (Irvine et al. 1991) at onset of the disease. Symptoms like cancerrelated pain (Hassey Dow 1995), menopausal symptoms (Vassilopoulou-Sellin & Zolinski 1992), weight gain (Rowan et al. 1993) and fertility changes (Hassey Dow & Roy 1994) can be seen as a result of surgery or adjuvant therapy for breast cancer. When receiving radiation therapy existing symptoms may worsen or new symptoms may occur. Thus the cancer treatment per se may lead to symptoms. Even though the techniques have been re®ned for delivering radiation therapy, adverse e€ects from treatment continue to be a problem for patients. The physical demand set forth by radiation therapy is mainly caused by its damage to chromosomal DNA thus restraining the reproductive ability of the cell. Since a tumor is surrounded by healthy tissue it is not possible to avoid normal cells also being damaged. The radiation tolerance of the surrounding tissue determines the maximum dose that can be o€ered (Wittes 1989). The nature of the sidee€ects is largely limited to the area of the treatment ®eld, although radiotherapy may cause generalized fatigue and malaise (Holmes 1997). For breast cancer patients with positive lymph nodes the treatment area includes the chest-wall, internal mammary lymph nodes, and whenever necessary, the loco-regional lymph nodes. Radiation therapy is delivered on an out-patient basis, ®ve days a week. For breast cancer patients the treatment period averages 5 weeks. It has been claimed that breast cancer patients experience symptoms from the treatment. In a study by Wyatt and Friedman (1998) the most common symptoms associated with radiation therapy were cancer-related pain, trouble in sleeping, fatigue, diculty in breathing, dry mouth, weakness and loss of feeling. Patients treated by surgery and radiation therapy indicated fatigue and pain as their most frequent

symptoms. Although symptom severity was low, these symptoms did not improve over time. The functional status also decreased, and never returned to the presurgical level. King et al. (1985) reported symptoms such as fatigue, skin irritation, anorexia, sore throat and cough to be present in more than 50% of the subjects treated over the chest. Local e€ects due to radiation can be highly unpleasant and skin alterations due to radiation therapy are a common problem for breast cancer patients (King et al. 1985, Weintraub & Hagopian 1990, Rose et al. 1996). In the study by King et al. (1985) 87% of the subjects treated over the chest reported skin irritation by the last week of treatment. Although modern technology and treatment techniques have been re®ned, the study of Rose et al. (1996) supports this ®nding. The only side-e€ect reported by breast cancer patients in their study were skin alterations (91%) at the completion of treatment. Skin alterations may include erythema, tanning, dry desquamation, moist desquamation and epilation (Sitton 1992). Other local e€ects described in the literature are anorexia, sore throat and cough for subjects treated over the chest (King et al. 1985). By the end of treatment 60% of the subjects reported problems with anorexia and 86% and 77% reported sore throats and cough. Irvine et al. (1998) studied fatigue and other symptoms in women with breast cancer receiving radiation therapy and found a correlation between symptom distress and fatigue. As symptom distress increased, so did fatigue. In their study a curvilinear relationship between radiation fraction and fatigue was found, meaning that fatigue increased as treatment progressed and then decreased. Symptom distress followed a similar pattern but increased more slowly than fatigue. A signi®cant di€erence was found between the level of symptoms before treatment and the level at 3 months after treatment. In nursing research quality of life (QoL) is used to study the e€ectiveness of speci®c rehabilitative e€orts, to understand the management of side-e€ects of treatment or to identify vulnerable periods in the illness continuum. QoL is a multidimensional concept and areas of conceptual agreement have been established (King et al. 1997). The nature of the concept of QoL re¯ects itself in the numbers of dimensions usually included when measuring QoL. The World Health Organizations Quality of Life group (WGOQOL) provides a de®nition that takes into account the individual's perception in relation to the environment: Quality of life is an individual's perception of their position in life in the context of the culture and value system in which they live and in relation to their goals, expectations, standards and concern. It European Journal of Oncology Nursing 4 (2), 78 ^ 88

80 European Journal of Oncology Nursing is a broad ranging concept a€ected in a complex way by the persons physical health, psychological state, level of independency, social relationship and their relationship to salient features of their environment' (Cella & Tulsky 1990).

The e€ect of cancer and its treatment on QoL for breast cancer patients has been identi®ed in the literature. For many women the impact of diagnosis and treatment on physical well-being, work and family continues into long-term survivorship. These areas have been identi®ed as areas concerning the greatest distress related to QoL for this group of patients (Berglund et al. 1991, Ganz et al. 1996, Ferrell et al. 1998). Despite continuous improvements in treatment procedures, patients undergoing treatment for cancer continue to experience several sidee€ects. Additional knowledge of the onset, frequency, duration and perceived severity of side-e€ects related to speci®c treatment sites should enhance the oncology nurse's ability to assess and provide e€ective interventions to the patients.

PURPOSE The purpose of this study was to describe experienced symptoms, severity for the most commonly reported symptoms and QoL during treatment and up to 3 months post-treatment, as perceived by patients receiving radiation therapy treatment for breast cancer.

MATERIAL AND METHODS Sample WengstroÈm et al. (1999) have previously described the sample. In the previous study the sample formed two groups that were randomized to a nursing intervention using Orem's self-care theory as a framework or standard care. The purpose of the study was to evaluate if a nursing care intervention would a€ect subjective distress, side-e€ects and QoL. The ®ndings indicate that there was a signi®cant e€ect of the intervention on subjective distress, but no signi®cant e€ects of the intervention were found for side-e€ects or QoL. For the purpose of the present study the sample includes analysis of the group as a whole. Breast cancer patients receiving treatment over the chest and locoregional lymph nodes were consecutively invited to participate in the study. Of the 175 invited patients, 134 accepted to participate. Exclusion criteria consisted of previous radiation therapy or inability to understand or speak the Swedish language. Approval of the study was received from the Ethics committee of the hospital. European Journal of Oncology Nursing 4 (2), 78 ^ 88

The mean age for the patients of the total sample was 60 years (range 37±83).

Instruments In addition to the collection of medical and demographic data, such as treatment dose, prior chemotherapy, marital status and work situation, two instruments were used to assess perceived side-e€ects and QoL. To assess cancer therapy-related symptoms a modi®ed version of the `Oncology Treatment Toxicity Assessment Tool (OTTAT)' was used. This instrument was originally developed by Youngblood et al. (1994) to compare the number of self-reported symptoms with those documented in the medical records of the patients, and to correlate self-report symptoms with QoL. A secondary purpose was to describe the most frequently reported symptoms and their severity on the OTTAT. This instrument was used to measure symptoms in out-patients in three di€erent settings: a radiation oncology clinic, a bone marrow transplant clinic and a medical oncology clinic for adults. The original OTTAT consists of 37 items. Included are, for example, `skin changes', `loss of appetite', `pain' and `diculty sleeping'. Each item is rated for severity on a 5-point scale ranging from 0 (none) to 4 (intolerable). The higher the score, the greater degree of experienced side-e€ects. To ensure content validity of the instrument, various sources were used to develop the symptom list. The sources included objective symptoms and subjective complaints described to practicing oncology nurses. The Eastern Cooperative Oncology Groups (ECOG) Common Toxicity Criteria also served as a guide, as well as symptoms reported in the literature (Wittes 1989). For the present study the instrument was independently translated into Swedish by two researchers and then compared for consensus. The instrument was also tested on patients in a pilot study preceding the present study. Since the instrument was used in this study for a sample consisting only of radiation therapy patients, a decision was made to omit nine of the items of the instrument. Those items were cold sores, jaw pain, soreness in vein where chemotherapy was given, decreased interest in sexual activity, diculty in urinating and blood in the urine. Thus, in this study 28 items was included in the translated version of the OTTAT. A high score indicates more symptom distress. Cronbach's coecient alpha obtained for the OTTAT in this study was 0.85. To assess QoL the `Cancer Rehabilitation Evaluation System- short form' (CARES-sf ) was used. This multidimensional instrument consists of a comprehensive list of 59 problems

Perceived symptoms and quality of life in women with breast cancer receiving radiation therapy 81

encountered by cancer patients. The instrument provides an assessment of the problems that cancer patients cope with and assesses behavior that is a€ected by cancer and its treatment. The scale yields a global score - a summary that re¯ects the patient's overall QoL and the response to all the patient relevant items on the instrument. Some subsections only apply to some patients, for example those patients that have received prior chemotherapy answer this subsection. The ®ve subscales re¯ect important domains of the QoL construct. The scales include physical functioning concerning disruptions in daily life related to disease and treatment, psychosocial functioning concerning communication and relationship problems, sexual functioning problems, medical interactions related to communication with the medical team and marital interactions such as problems in an important relationship. Items were scored according to their concern to the individual on a 5point Likert scale ranging from 0 (ˆdoes not at all apply) to 4 (ˆapplied very much). Patients complete 37±57 items as some of the subsections only apply to some patients. A higher score indicates more perceived problems and thus a poorer QoL. Previous studies have documented the reliability and validity, including internal consistency, of the instrument (Coscarelli & Shag 1991, te Velde et al. 1996). An alpha coecient for the CARES-sf global score for this study was 0.85 and for the subscales they ranged from 0.76±0.94.

Procedure Symptoms and QoL were measured ®ve times ± at baseline before the start of radiation therapy treatment, at the third week of treatment, at the end of the ®fth week of treatment, 2 weeks after completion of treatment and at 3 months posttreatment. Data collection occurred in a radiation therapy clinic of a university hospital in Sweden. All the included patients were treated with a linear accelerator and conventional fractions (2 Gy/5 days a week) were used to achieve the prescribed doses (46±56 Gy) (WengstroÈm et al. 1999).

Data analysis Data analysis was performed using Statistical Products and Service Solutions (SPSS) 8.0 for Windows. Descriptive statistics were generated about sample characteristics. The total sample was used to describe the pattern of side-e€ects and QoL. Mean, standard deviation (SD) and percent of perceived symptoms and their severity are given. Internal consistency for the scales was expressed using Crombach's alpha. Correlations

between measurements were expressed using Pearson's product moment correlation coecient.

RESULTS Medical and demographic data Fifty-®ve percent (nˆ74) of the sample had a high school education. Ten percent (nˆ13) college and 35% (nˆ47) university education respectively. Fifty-three percent were employed (nˆ71), 3% (nˆ4) unemployed and 44% (nˆ59) were retired. Seventy percent (nˆ91) were living with family and 32% (nˆ43) were single/ widowed. Sixty-six percent (nˆ63) of the sample had received a mastectomy and 34% (nˆ45) breast-conserving surgery. Previous chemotherapy treatment included 47% (nˆ63) of the sample and endocrine therapy 56%.

Description of symptoms and QoL trends over time Symptoms Of the 28 assessed symptoms fatigue (63%), diculty in sleeping (41%) and depression (37%) were mentioned most frequently by the sample (nˆ134) at baseline. By the third week fatigue (87%), diculty in swallowing (58%) and diculty in concentrating (59%) were reported and, at completion of radiation therapy, fatigue (90%), skin changes (74%) and pain (49%) were the most frequent symptoms. Two weeks after treatment the most commonly reported symptoms were fatigue (78%), skin changes (62%) and diculty in sleeping (53%) and, 3 months posttreatment, fatigue (62%), diculty in sleeping (44%) and cough (41%) were reported (see Table 1). Two di€erent patterns of the most common symptoms during the measurement period are presented in Figures 1 and 2. Figure 1 indicates that fatigue was the most prevalent symptom for the whole group. Fatigue increased as the treatment progressed. It was common at week 3 (87%) and remained at a high level at the ®fth week (90%) and returned to pretreatment levels by 3 months post-treatment. Of those patients who reported fatigue at week 5, 56% rated this as mild to moderate and 30% rated it as severe to intolerable. Forty-one percent of the patients experienced sleep disturbances at baseline. At completion of treatment, 59% reported sleep disturbances. Forty percent indicated mild to moderate symptoms and 11% had severe to intolerable symptoms. Skin symptoms increased steadily from the third week of treatment to peak at completion of therapy. By this time 74% of the patients European Journal of Oncology Nursing 4 (2), 78 ^ 88

82 European Journal of Oncology Nursing Table 1 Prevalence of symptoms reported by the total group (nˆ134) T|me in treatment Symptoms (OTTAT)

Baseline (n) (%)

Week 3 (n) (%)

Week 5 (n) (%)

Follow-up 2 Weeks (n) (%)

Follow-up 3 Months (n) (%)

Taste change Loss of appetite Nausea Vomiting Weight loss Sore mouth Cold sores Dry mouth Cough Sore throat Difficulty swallowing Shortness of breath Palpitations Swollen feet Numbness in f|ngers and/or toes Headache Fatigue Depression Difficulty concentrating Fever Bruising Bleeding Hair loss Skin changes Difficulty sleeping Pain Diarrhea Constipation

12 (9%) 19 (14%) 22 (17%) 22 (17%) 6 (5%) 7 (5%) 13 (10%) 43 (32%) 31 (23%) 13 (10%) 10 (8%) 41 (31%) 17 (13%) 19 (14%) 25 (19%) 33 (25%) 83 (63%) 49 (37%) 44 (33%) 5 (4%) 12 (8%) 4 (3%) 25 (19%) 14 (11%) 55 (41%) 26 (20%) 12 (9%) 17 (13%)

32 (24%) 41 (31%) 56 (42%) 6 (5%) 11 (8%) 18 (14%) 11 (8%) 67 (50%) 64 (48%) 64 (48%) 77 (58%) 59 (44%) 32 (24%) 24 (18%) 32 (24%) 45 (34%) 115 (87%) 56 (42%) 66 (50%) 11 (8%) 10 (8%) 3 (2%) 14 (11%) 63 (47%) 63 (47%) 48 (36%) 17 (13%) 19 (14%)

44 (33%) 48 (36%) 63 (47%) 5 (4%) 22 (17%) 20 (15%) 9 (7%) 76 (57%) 65 (49%) 68 (51%) 93 (70%) 57 (43%) 31 (23%) 29 (22%) 31 (23%) 46 (35%) 119 (90%) 53 (40%) 60 (45%) 16 (12%) 10 (8%) 2 (1%) 13 (10%) 99 (74%) 67 (59%) 65 (49%) 14 (11%) 26 (20%)

35 (26%) 42 (32%) 35 (26%) 7 (5%) 24 (18%) 16 (12%) 12 (9%) 61 (46%) 65 (49%) 38 (29%) 51 (38%) 60 (45%) 31 (23%) 28 (21%) 26 (20%) 39 (29%) 104 (78%) 57 (43%) 59 (44%) 20 (15%) 14 (11%) 3 (2%) 14 (11%) 82 (62%) 71 (53%) 59 (44%) 16 (12%) 21 (16%)

25 (19%) 23 (17%) 16 (12%) 1 (1%) 15 (11%) 12 (9%) 4 (3%) 46 (35%) 55 (41%) 24 (18%) 20 (15%) 69 (52%) 30 (23%) 27 (20%) 34 (26%) 34 (26%) 83 (63%) 51 (38%) 50 (38%) 16 (12%) 16 (12%) 6 (5%) 12 (9%) 36 (27%) 59 (44%) 39 (29%) 11 (8%) 25 (19%)

Fig. 1 Patterns of the most commonly perceived symptoms for the total group. Sleep; Pain; Nausea; Sore throat; Di¡. swallowing.

reported skin symptoms. Sixty-eight percent reported mild to severe skin symptoms while 6% had intolerable skin symptoms. At the last follow-up 3 months post-treatment 27% still experienced symptoms. European Journal of Oncology Nursing 4 (2), 78 ^ 88

Fatigue;

Dry mouth;

Skin;

At week ®ve 57% reported problems with dry mouth as a result of the treatment; of these 53% were mild to moderate and 5% were severe. During the follow-up period the symptoms slowly decreased to pre-treatment levels.

Perceived symptoms and quality of life in women with breast cancer receiving radiation therapy 83

Fig. 2 Patterns of pulmonary symptoms during and following radiation therapy

Problems with sore throat and diculty in swallowing increased as treatment progressed. At 3 weeks 46% indicated sore throat as a mild to moderate symptom and 6% as a severe symptom. Fifty-six percent of the sample reported diculties swallowing; of these 45% indicated a mild to moderate symptom while 13% a severe to tolerable symptom. At completion of the treatment symptoms of sore throat remained at the same level but the diculties in swallowing increased to 59% (mild to moderate) and 11% (severe to intolerable). Mild to moderate pain in the treatment area and the arm on the treated side was reported by 20% of the patients at baseline. At completion of treatment pain was reported by 49% of the patients; of these 41% reported mild to moderate and 8% reported severe to intolerable pain. Although nausea is rarely described as an existing symptom for patients receiving radiation therapy to the chest (WengstroÈm & Forsbeg 1999), and even though nausea did not belong to the group of the most prevalent symptoms, it was added to Figure 1. Nausea followed a similar pattern to that described for the other side-e€ects with a peak at completion of treatment. At baseline 17% of the patients experienced nausea and, of these, 4% had emetic episodes. At completion of treatment 45% of the patients rated nausea as a mild to a moderate symptom and 2% as a severe to intolerable one; 4% of these patients experienced emetic episodes. By the last follow-up, nausea had decreased below baseline level. Figure 2 shows the pattern of dyspnoea and cough. The pattern of these symptoms was quite

dyspnoea;

Cough.

di€erent from the other side-e€ects. During the treatment period from the third week the reported frequency of dyspnoea remained the same but at 2 weeks and 3 months posttreatment a steady increase in dyspnoea was reported. During the follow-up period, 52% of the patients reported dyspnoea and, of these, 17% had moderate symptoms and 12% had severe to intolerable symptoms. Forty one percent of the patients reported cough 717% perceived this as moderate and 3% as severe to intolerable.

Quality of life The pattern of QoL measured with CARES-sf provides a global QoL score as well as ®ve summary scores that re¯ect di€erent dimensions of QoL. For the total sample the pattern for the global score showed an improvement in QoL as the treatment progressed. Initially at baseline the mean of the scores were at their highest, 0.76 (SD 0.48). During the treatment period at 3 weeks the mean score was 0.70 (SD 0.49) and at 5 weeks the mean score reached 0.68 (SD 0.47). At follow-up the scores leveled out and remained at that level mean 0.65 (SD 0.47) for both follow-up measures. For the subscales the pattern was somewhat di€erent. Psychosocial functioning was perceived as poorest before treatment started and at completion of treatment. Problems with physical functioning increased as the treatment progressed and peaked at completion of treatment. On the medical interaction scale problems with communication with the medical team were perceived as most severe at start and completion European Journal of Oncology Nursing 4 (2), 78 ^ 88

84 European Journal of Oncology Nursing Table 2 Mean values and SD for symptoms and QoL for total sample Variable

Baseline Week 3 Week 5 FU 1 FU 2

OTTAT (n) Mean SD

128 7.8 8.2

114 14.0 11.0

116 16.7 10.5

115 116 13.9 10.7 10.5 8.9

CARES-sf (n) Global score Mean SD

132

130

129

126

0.68 0.47

0.76 0.48

0.70 0.49

Psychosocial (n) 132 Mean 0.87 SD 0.69

129 0.79 0.68

129 127 121 0.79 0.74 0.71 0.81 0.67 0.66

Physical (n) Mean SD

132 0.66 0.58

129 0.80 0.68

129 125 120 0.83 0.47 0.65 0.64 0.66 0.61

Medical (n) Mean SD

131 0.49 0.54

129 0.48 0.67

128 126 119 0.40 0.41 0.40 0.53 0.62 0.55

Sexual (n) Mean SD

126 1.51 1.24

125 1.51 1.21

127 119 117 1.47 1.46 1.26 1.21 1.19 1.11

Marital (n) Mean SD

90 0.59 0.40

87 0.55 0.42

88 0.55 0.47

0.65 0.47

121 0.65 0.49

86 85 0.58 0.53 0.48 0.44

of treatment. Problems with sexual functioning remained at a stable level during treatment. At the last follow-up sexual functioning scores decreased, indicating fewer perceived problems. Marital interactions followed a similar pattern (See Table 2).

Correlational analyses Table 3 shows correlations between symptom measures and Table 4 shows correlations between QoL scores during and after the treatment period. There were positive signi®cant correlations between the measures over time in both side-e€ects and QoL, indicating that the two scales were valid for measuring symptoms and QoL.

DISCUSSION The ®ndings of this study provide information about perceived symptoms and QoL of breast cancer patients during and up to 3 months following radiation therapy. It was found, as expected, that there was an increase in perceived symptoms as the treatment progressed. When analyzing patterns of side-e€ects it was concluded that there were no di€erences in the pattern of side-e€ects for the patients that had received chemotherapy prior to radiation therapy. During the third month of follow-up a majority of the symptoms never returned to the European Journal of Oncology Nursing 4 (2), 78 ^ 88

baseline level. This is consistent with ®ndings in previous studies (King et al. 1985, Rose et al. 1996, Irvine et al. 1998). This, together with the disruptive nature of the treatment schedule, usually ®ve sessions/week for 5±6 weeks, may lead to functional impairment such as problems in maintaining family, social and working roles for the women who continue to keep their normal schedules. Fatigue was the most prevalent symptom at all points of measurement. Most of the women in this study experienced mild to moderate fatigue, but 30% rated fatigue as severe to intolerable. This result corroborates with other studies (Irvine et al. 1998, Smets et al. 1998). There is a growing awareness that fatigue is an important clinical problem for patients receiving radiation therapy. The pattern of fatigue indicates that the nurse (or other health-care practitioner that cares for the patient) needs to assess the prevalence of fatigue at regular intervals over the course of the treatment. It is also important to assess what other symptoms are associated with fatigue, such as sleep disruption or pain, in order to treat these symptoms simultaneously. Other treatments including previous chemotherapy or anti-estrogen therapy may also in¯uence the levels of perceived fatigue (Woo et al. 1998). The patient needs to be informed when to expect the highest levels of fatigue and also that by 3 months post-treatment the fatigue will have diminished for most patients. It is important to help the patient to recognize and accept the limitations caused by fatigue and to teach the patient e€ective strategies to reduce its impact, such as conserving energy, reducing or increasing physical or social activities or distraction. Sleep disruption was also a prevalent symptom in this group of patients. At 5 weeks 59% reported diculty in sleeping. The fatigue score has not been analyzed in this study to determine to what extent this may have increased. Half of the patients in the sample for this study received anti-estrogen therapy in conjunction with radiation therapy. As mentioned before there is some evidence in the literature that there may be a relationship between anti-estrogen treatment, sleep disturbance and fatigue (Irvine et al. 1998, Woo et al. 1998). The frequency of other symptoms increased at a slower rate with the exception of skin alterations. The skin is a radiosensitive tissue with a high cellular turnover rate and repair will not take place until the treatment period is over (Wittes 1991). By the completion of treatment 74% of the women reported skin changes. A number of factors such as treatment site, volume of treated tissue, individual radiosensitivity, radiation type, nutritional status and adherence to recommended care may in¯uence the e€ect radiation therapy has on the skin.

Perceived symptoms and quality of life in women with breast cancer receiving radiation therapy 85 Table 3 Correlations between QoL measurements during and after the treatment period Global baseline Global score baseline Global score Week 3 Global score Week 5 Global score Follow-up 2 weeks Global score Follow-up 3 months

Pearson Correlation n Pearson Correlation n Pearson Correlation n Pearson Correlation n Pearson Correlation n

Global Follow-up 2 weeks

Global Follow-up 3 months

Global Week 3

Global Week 5

0.69**

0.72**

0.69**

0.67**

1.00 132 0.69**

129 1.00

128 0.68**

125 0.74**

121 0.72**

129 0.72**

130 0.68**

127 1.00

123 0.83**

118 0.79**

128 0.69**

127 0.74**

129 0.83**

122 1.00

117 0.82**

125 0.67**

123 0.72**

122 0.79**

126 0.82**

116 1.00

121

118

117

116

121

**Correlation is signif|cant at the 0.01 level (2-tailed)

Table 4 Correlations between symptom measurements with the OTTAT during and after the treatment period Symptom baseline Symptom baseline Symptom Week 3 Symptom Week 5 Symptom Follow-up Week 2 Symptom Follow-up 3 months

Pearson Correlation n Pearson Correlation n Pearson Correlation n Pearson Correlation n Pearson Correlation n

Symptom Week 3

1.00

0.67**

Symptom Week 5

Symptom Follow-up 2 weeks

Symptom Follow-up 3 months

0.63**

0.42**

0.50**

128 0.67**

111 1.00

112 0.82**

110 0.71**

112 0.72**

111 0.63**

114 0.82**

102 1.00

102 0.68**

98 0.63**

112 0.42**

102 0.71**

116 0.68**

102 1.00

101 0.69**

110 0.50**

102 0.72**

102 0.63**

115 0.69**

102 1.00

101

102

116

112

98

**Correlation is signif|cant at the 0.01 level (2-tailed)

Some of these factors may be a€ected by interventions designed to improve knowledge and teaching of self-care measures in order to minimize skin trauma and irritation. An assessment of the previously mentioned factors and education on how to manage skin changes and promote healing needs to be routinely performed. In addition adequate nutritional status is also needed in order to successfully promote healing since quite a few of the patients experience nausea. Information about how to prevent infection and how to minimize discomfort should be included in the basic foundation of symptom management in radiation therapy. Dry mouth was a problem for approximately half of the patients from the third through to the ®fth week of treatment. The majority of the patients perceived the problem as mild to moderate and indicated that drinking water,

chewing gum or saliva tablets solved the problem. Approximately half of the patients experienced mild to moderate pain at the completion of treatment. Of these patients 8% reported severe to intolerable pain. This result corroborates with the study by Miaskowski and Dibble (1995) where 47% of out-patients with breast cancer experienced pain. Little is known about the true impact of pain on out-patients with breast cancer. The patients in this study described the pain as localized to the arm, axilla and chest wall. Throbbing, burning, pricking sensations sometimes associated with a numbness of the arm characterized the pain descriptions. Such descriptions suggest that the pain experienced might be a neuropathic pain as a complication from previous surgery. Since the number of patients experiencing pain increased as treatment progressed, the radiation therapy European Journal of Oncology Nursing 4 (2), 78 ^ 88

86 European Journal of Oncology Nursing

and the associated swelling in the treatment area appeared to increase the pain. The relatively high number of patients that experience pain suggests the necessity of an ongoing assessment of pain throughout the course of treatment in order to initiate interventions to alleviate its e€ects for these patients. Information and education about the e€ects of radiation therapy on pain are also required. Studies are needed to provide information on how to target and focus nursing interventions for this problem. The prevalence of nausea for this group of patients treated over the chest wall has to the best of our knowledge not been described as a common side-e€ect for this group of patients before. Nausea and emesis resulting from fractionated radiation therapy is probably less frequent and less severe than that seen with single high-dose treatments and total body irradiation. But the duration for those patients whose treatments extend over several weeks may be considerably longer. Even if the treatment per se may cause nausea, confounding factors, such as previous chemotherapy treatment, may also to some degree explain the prevalence of nausea in this group of patients. Previous experience of nausea and emesis related to chemotherapy treatment can result in conditioned symptoms such as anticipatory nausea. There seems to be a need for indepth symptom analysis of concomitant factors that may be associated with or cause nausea for this group of patients. Factors such as previous chemotherapy, pain, taste change, gastrointestinal alterations, metabolic imbalances, depression or anxiety need to be included. Good symptomatic relief of nausea and emesis through the provision of medical treatment with antiemetic drugs is especially vital for patients whose treatment extends over several weeks (Priestman et al. 1993). It is well known that radiation therapy treatment over the chest can cause respiratory side-e€ects. Lind et al. (1997) has described that early reactions include radiation pneumonitis and late reactions such as radiation ®brosis. The early reaction symptoms include dyspnoea, cough and fever (Gagliardi 1998). The di€erent pattern of the pulmonary reactions in this study can be explained by the fact that the lung is a late responding tissue to radiation (Lind et al. 1997). At the last follow-up measure at 3 months 29% of the reported moderate to intolerable dyspnoeic symptoms. Twenty percent of the patients reported cough, which was perceived as moderate to intolerable. Since lung symptoms are included as one of the main complications after radiation therapy treatment for breast cancer the clinical impact of such symptoms and how QoL is a€ected seems to be of great importance. Adequate education and information about what European Journal of Oncology Nursing 4 (2), 78 ^ 88

to expect, including the pattern of dyspnoeic symptoms that may well continue after treatment is completed, is essential. Providing information on the importance of seeking medical advice if symptoms are persistent and include fever also needs to be a part of the nursing care of the patient. When measuring QoL in this group of patients it is important to include confounding factors such as menopausal symptoms. When counselling the women in this study it became evident that this was a major problem for many of them. There are descriptions in the literature that women with cancer who are experiencing major menopausal symptoms have reported a signi®cant decrease in their QoL (Hassey Dow 1995). To date, there remains controversy about providing hormone replacement treatment for menopausal symptoms for women with breast cancer and thus management of symptoms in order to increase QoL may be hard to achieve. The scores for the sample in this study on the Global CARES-sf corroborate with previous studies (Coscarelli & Shag 1991). The Global score showed that the patients perceived a steady improvement in QoL from baseline to the last follow-up period at 3 months post-treatment. In general the ®ndings seem to indicate that QoL for this group of patients were fairly good. An interesting ®nding is that the QoL for the psychosocial scale were perceived as better as the treatment progressed. This may be explained by the fact that daily interactions with healthcare professionals o€ers a sense of support for the patients. Physical functioning decreased as treatment progressed and this result corroborates with the increase in perceived side-e€ects and the e€ect this may have on physical functioning. The value of follow-up nursing care became evident in this study since many of the symptoms persist after the treatment is completed. The nurses are familiar with the patient's physical status and individual requirements for education and support. Hence, patient follow-up after completion of therapy seems to be a logical extension of the nurse's responsibilities. In order for the patients to bene®t from appropriate nursing care interventions when receiving radiation therapy, it is important to recognize radiation therapy nursing as a distinct and integral part of patient care. In order to improve radiation oncology nursing there is a need to collect more data concerning nursing care interventions to substantiate practice.

SUGGESTIONS FOR FUTURE STUDIES Early interventions to reduce fatigue need to be studied since fatigue is a major concern for

Perceived symptoms and quality of life in women with breast cancer receiving radiation therapy 87

patients with cancer and problems with an increase in perceived fatigue during treatment with radiation therapy seems possible. In order to target and focus future nursing care in radiation oncology, studies are needed that evaluate pharmacological and non-pharmacological pain-relieving strategies used for this population of patients. Studies are needed that focus on detailed descriptions of nausea, including the assessment and description of concomitant factors associated with nausea for breast cancer patients receiving e€ectiveness to relieve nausea in order to provide useful to substantiate practice. Similar nausea prevalence studies are justi®ed for the various main oncological diagnoses treated by radiation therapy.

Clinical implications The present ®ndings provide some direction for assessment and intervention for perceived symptoms and side-e€ects for women receiving radiation therapy for breast cancer. Knowledge of onset, frequency, duration and perceived severity of side-e€ects related to speci®c treatment sites will enhance the oncology nurse's ability to assess and provide e€ective nursing care to patients. From the second week and up to 2 weeks after completion of therapy is the critical time-period for targeting interventions for symptoms and side-e€ects arising from radiation therapy. ACKNOWLEDGEMENT This study was generously supported by King Gustav: V Jubilee fund. The authors acknowledge the assistance of Anders SjoÈberg, PhD with advice for the statistical analysis of the data.

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